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Conception and Embryos

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s il permissible to destroy human embryos in the context of medical research? This ques­
tion is urged on us by the fact that the study of human embryos and their parts promises
great health and other benefits to humans. Human embryos contain, among other things,
embryonic stem cells. The study of these cells may give us insight into cell specialization, that
is, into how stem cells become, for example, liver or brain cells.
Human embryonic stem cells This in turn may provide insight into disease and its amelior­
Undifferentiated human cells located ation, since some diseases (e.g., cancer) occur due to problems
in the human embryo with the in cell differentiation, as well as insight into the regeneration of
capacity to renew themselves by
means of cell division and to develop
diseased or damaged organs. In addition, research on human
into more specialized cells, e.g., brain embryos helps to produce more effective reproductive technolo­
and liver cells. gies (e.g., in vitro fertilization or !VF). The cost of these benefits
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is, of course, that human embryos are destroyed.
In Canada, it is legal to create and destroy embryos for the purpose of facilitating the
improvement of and instruction in assisted reproductive technology. It is also permissible
(under strict conditions) to destroy embryos in the context of research on stem cells. To
make sense of the morality of these and other uses of human embryos in scientific and
medical research one must develop an account of moral standing, i.e., determine the class
of beings who count morally. Such an account or criterion would tell us whom to consider
in deliberating about the appropriate ways of pursuing our scientific and medical ambi­
tions. An account of moral standing is a necessary feature of all ethical frameworks. We
might agree that we ought to respect rights and that we ought to relieve suffering. But in
order to follow these requirements it is important to determine whose suffering matters
and which beings have rights. A criterion of moral standing will assist in determining
this. It will specify a feature or set of features that an individual or collective must possess
in order to count morally. A full interpretation of moral standing will tell us how to treat
these entities.
If human embryos and perhaps some of their constituent parts matter morally, then there
are moral restrictions (however weak) on what we are permitted to do to them in seeking
scientific knowledge and medical benefits for humans. Al some stage after the fusion of a
human egg and a human sperm, or conception, an individual human embryo emerges. It is
undeniable that this embryo is a member of the species Homo sapiens. What is far less clear
is whether this individual is a being with moral status. It is common to assume that being
Homo sapiens is a sufficient condition of having moral standing. It is, thus, by virtue of our
chromosomal structure that we matter morally from the moment we come into existence.
Despite its prevalence this view is difficult to defend, for it is hard to see why mere species
membership provides the basis of moral standing. It seems as implausible as taking sexual
Sagan and Singer: The Moral Status of Stem Cells 3
2 CHAPTER 1 Conception and Embryos

orientation or race as the basis of moral standing.These things just do not seem to be the
sort of features that matter. None of the authors whose works are included in this chapter
■•WW The Moral Status of Stem Cells
Agata Sagan and Peter Singer I Metaphilosophy 2007; 38: 264-84.
seeks to defend a view based in species membership.
A more promising line of argument is that a human embryo has moral standing because Introduction
it has the potential to develop into a being like you or me, an individual that clearly pos­
Most ethical objections to the use of stem cells are What Is Crucial for Development into a Being with
sesses moral standing. Because most human embryos have this potential, the argument Uncontested Moral Standing?
directed at the use of human embryonic stem cells­
goes, they possess moral standing, and therefore we have direct obligations to them. In
in particular, at the destruction of human embryos in What, then, is crucial for the entity to be able to
particular, we have the obligation not to destroy them without compelling moral justifi­
order to obtain these cells.... But is the destruction develop into a being that has uncontested moral
cation. This position is the focus of the first article of this chapter. In "The Moral Status
of embryos really the key ethical issue concerning the standing? It seems that there must be a nucleus, with
of Stem Cells," Agata Sagan and Peter Singer argue that if we admit that human embryos
use of human embryonic stem cells? the genes needed for development, and probably some
have moral standing because they have the potential to become beings like us, there is no
Embryonic stem cells are mainly derived from the cytoplasm. (The cytoplasmic components contain
reason for rejecting the claim that the pans of those same embryos (e.g., stem cells) have
inner cell mass of the embryo, from which the later resources in addition to those in the nucleus.) Every­
standing, for they, too, have the potential to become beings like us.The authors argue
stages of a human being develop....This inner cell thing else that is required seems to be the environ­
that this is absurd and so the position that human embryos have moral standing for this
mass can, if moved to ment in which life develops....
reason should be rejected. They add to this that the view attributing moral standing to
Trophoblast another lrophoblast,
human embryos on the grounds that each embryo is a d,istinct individual with a rational The outer layer of the early embryo develop into an adult.
nature is flawed, since an embryo does not currently possess the ability to reason. They {or blastocyst) which attaches the Do these cells perhaps
Stem Cells
believe that human embryos have no standing whatsoever, and that therefore we are free embryo to the uterine wall and Where Do Stem Cells Fit among the Possible Ori·
functions as the nutritive pathway; have some moral
to use them for scientific and medical purposes. gins of a New Individual?
in addition, it plays a role in the status themselves,
In "The Ethical Case against Stem Cell Research," Soren Holm rejects common argu­ It is clear that even a single embryonic stem cell can,
development of the placenta. independently of the
ments both for and against granting human embryos moral standing.In his view, these pos­ by the transfer of its nucleus into an enucleated egg,
status of the embryo
itions lead to highly counterintuitive implications, and therefore they ought not to be relied be the beginning of a new human life (Wakayama
Moral status (or moral standing) of which they once
on in seeking public policies regulating the use of human embryos in medical research. He 1999). Indeed, other stem cells (with the possible
A conception of moral standing formed a part? ... To
argues further that "appeal to consistency" arguments, intended to drive people to accept determines the range of beings exception of germ stem cells) can also be the begin­
set the stage for that
the use of all manner of research on human embryos on the grounds that we already allow toward whom moral agents have ning of a new human life, but it seems that embryonic
discussion, we need
some embryo research, are problematic. According to Holm, it does not follow from the fact obligations. Such a conception will tell stem cells, because they are not so differentiated, are
you the feature or set of features a to give closer atten­
that in Canada we permit the creation and destruction of human embryos in the context better suited for cloning than any other cells....
being must possess to count morally. tion to the nature
of research on human reproduction and on improving reproductive technologies that we If somethmg can develop into a new human
F°' example, some argue that if an of embryos and to
ought to permit it for the purpose of generating other medical and health benefits, since the individual has the capacity to suffer, being, should we think of u as having the moral status
the question of what
goods at stake in each case are distinct. He suggests that the most plausible account of moral then that individual has moral standing of an embryo? If what is important is that an entity
human entities can
standing is gradualist in nature: moral standing develops gradually as the human develops. and therefore moral agents have can become an adult human being, then should not
direct obligations to that Individual. develop into a mature
Accordingly, Holm contends that human embryos have some standing but less than that of that entity have the same status as an embryo that can
human being ....
the average mature adult human being.This is sufficient in his view to place a justificatory develop into a mature human being? ...
burden on those who want to destroy human embryos for medical and scientific purposes. Those who do think that the embryo is precious
The third article focuses on the fact that technological advancement does not affect The Beginnings of Human Life because of its potential to become a mature human
all members of society equally.Reproductive technology threatens to affect women more The Definition of the Embryo being seem to be required to regard an embryonic
seriously than men, since they gestate and undergo reproductive therapies. Accordingly, The standard sense of the term "embryo," in reference stem cell as precious for the very same reason.One
feminist philosophers have taken a keen interest in research on human embryos. In "Fem­ to mammals, is usually understood to refer to the could imagine differences in the value accorded to
inists on the Inalienability of Human Embryos," Carolyn Mcleod and Fran�oise Baylis entity resulting from che fertilization of the egg by the stem cell and the embryo, just as there could be
argue that feminists should be wary of arguments that reject the use or commodification of the sperm, creating the zygote, until around the time differences between the embryo and the newborn
human embryos on grounds that these embryos are morally inalienable to the women who when organs begin to form . ... Although the very infant, but it would seem that if the human embryo
produce them.This position has potentially deleterious effects on women's autonomy and concept of something being an "embryo" suggests that has moral standing and is entitled to protection in
reproductive freedom, in part because it fails to take account of the diversity of experience it has the capacity to or is likely to develop into some virtue of what it can become, then the same must be
among women.Not all women view embryos that have been created using their eggs as more mature stage or adult form, in practice the term true of human embryonic stem cells....
inalienable to them. Arguments that rely on this assumption risk perpetuating the norm is also applied to entities that-perhaps because of
that women should view their embryos as inalienable.Although McLeod and Baylis do not some defect or because they have developed in the Implications of Granting Stem Cells Moral Status
take a stand on the moral status of human embryos, they contend that any comprehensive fallopian tube rather than in the uterus-have no If a new life is precious and entitled to protection,
view must take account of the oppression and exploitation of women. possibility of developing to maturity.... it seems that a minimal implication of this is that
Sagan and Singer: The Moral Status of Stem Cells 5
CHAPTER 1 Conception and Embryos

- weight here placed upon it. Given that we all agree the Lee and George sense that gives rise to a violation
we should, if other things are equal, protect the new ��ational nature that the human embryo in its present form cannot of autonomy or the thwarting of hopes and desires
life from destruction and do our best to enable it to The capacity to reason freely about what to do and reason, has never been able to reason, and will not for the future. Rather, it is the immediately exercis­
develop.What, then, would the inclusion of stem cells \ about what to believe. ___ _ be able to reason for a long time, or possibly will able-or at least, to take account of cases of temporary
in the circle of precious entities require from us? never be able to reason, is it more accurate to say that unconsciousness, previously exercised-capacity to
The most obvious implication is that we would "Some entities have intrinsic value and basic rights the human embryo "is a distinct individual with a reason that is required for killing to have these effects.
not be permitted to use stem cells, no matter whether and other entities do not. Such a radical moral dif­ rational nature" or to say that the human embryo "is This strongly suggests that these aspects of a person's
they originated from newly destroyed embryos or ference logically must be based on a radical onh>· a distinct individual with the potential to become a existence are more relevant to the wrongness of kill­
from stem cell lines that have been in existence for log ical difference (that is, a radical difference rational being?" In our view, the former description ing than whether the being is of such a nature that it
many years, or were obtained by some other method among those entities themselves). And so the basis 1s misleading.The embryo does not have "a rational will eventually be able to exercise a capacity to reason.
not involving the destruction of embryos at all. for that moral difference �-- -- - - �--.i nature." What it has is the genetic coding that may, When Lee and George assert that a radical moral
We would not even be permitted to use stem cells (a difference in the way Ontological under favourable circumstances, lead it to develop difference between entities that have intrinsic value
gy is the study of the
derived from adults, children, fetuses, or umbilical­ they should be treated) Ontolo ultimate constituents of the into a being with a rational nature.... and basic rights and entities that lack such value and
cord blood.All these entities can develop into adult must be the natures of universe. To make an ontological rights must be based on "the natures of those entities,
human beings.But that is not all.Should we allow all those entities, not their claim is to make a claim about not their accidental characteristics," they beg several
embryonic stem cells to grow into adults? If we accept accidental characteris the nature and characteristics of From the Factual Claim to the
questions. They seem to assume a sharp dichotomy
that such entities are precious, then we would have tics which involve merely L.._ what exists in the universe. Moral Claim
- - - between, on the one hand, beings that have intrinsic
to take the same view of all the cells of the embry
o. quantitative d;U �J erences, Even if we were to accept lee and George's ontological value and basic rights and, on the other hand, beings
Should we then split the early embry o and, when the or differences in degree. (By "accidental" qualities, claim, that would bring us no nearer to the moral con­ that lack such value and rights. Such a dichotomy may
resulting embryos have grown, split them again? ... we mean those attributes that do not help to define clusion they set forth in the final paragraph of their be convenient for law and public standards of ethics,
Should we also try to locate all other cells in our body the nature of an entity. In humans, age, size, stage essay, that the embryo "is intrinsically valuable as a but we should not assume that it exists in nature.
that have the potential to develop into more mature of development, state of health, and so forth are subject of rights and deserves full moral respect." For We may grant that rocks have no intrinsic value or
human beings , take as many as possible, and enable accidental qualities.) The immediately exercisable if we define "rational basic rights, and that beings capable of exercising a
them to do so?. .. No society on earth ...does any capacity to reason and make free choices is only nature" as they define capacity to reason do have both intrinsic value and
of this We do not even consider ourselves oblige d the development of the underlying basic, natural Intrinsically valuable
it, we can still resist basic rights, but there are many intermediate cases.
capacity for reasoning and free choice, and there If a thing (e.g., pleasure) has intrinsic 1
to split the early embryo, which is an easy and reli­ value, then it is worth having or the claim that having The gradual development of the embryo, fetus, and
able way of allowing its cells to develop into human are various degrees of that development along a I
pursing for its own sake, which need a rational nature ... child suggests one ground for the existence of inter­
or is not a distinc t \
beings.Nor do we support research that will facilitate continuum. But one either is not rule out that it is worth having or suffices for being a mediate cases....
future attempts to allow all of these entiues to real­ subject with a rational nature (the traditional pursuing for other reasons. subject of rights, or More significantly, the question of whether a
ize their potential.We don't seriously entertain the definition of "p ersuu"). So, Singer is correct to Rights being intrinsically given characteristic defines the nature of an entity or
notion of striving to actualize the potential of every say that the right to life must be based on what is A specific kind of moral constraint valuable, or deserv­ is accidental to it cannot be used as an argument that
entity that could become an adult human being.... true of the entity now, '- -- -- __,..,.... on what it is permissible to do in the
erson
p service of some worthy goal. If you ing of moral respect. seeks to answer the question, what kind of beings
not just what is true of l A philosophically controversial Rather, it would seem have intrinsic value and rights? First we must decide
its future. But it is true notion. A person is an individual have a right against torture, then at
that the morally rel­ what kind of being has intrinsic value and rights,
Objections of the human embryo \ (not necessarily human)
1he very least others have a reason

--
in higher order not lo torture you to, e.g., promote evant characteristic and only then can we say what characteristics define
In a recent essay, Patrick lee and Rober t George now that he or she is a possessing certa and abilities social well-being or security. on which such claims its nature and what are accidental to it. We must not
cog t ve cap a ities
(2006a) have responded to claims that are in some distinct individual with j (e.g.,nithe �
capacity for self- of value should be here say, "We already know that all and only human
respects similar to those that we have made above....
l
a rationa l nature, even awareness and awareness of based is "the immediately exercisable capacity to beings have intrinsic value and rights, so the answer
1 Ultimately lee and George assert that
the embryo has though it will ta ke hi m on_:'.:::lf over time)._ _
is a potent ial human reason and make free choices." is that you must be a human being." That assumes
a right to life not because it or her several years fully Why do we say this? Consider the grounds on the conclusion that Lee and George need to establish.
being but because "as a matter of basic biological fact to actualize his or her basic, natural capacities so
the earli­ which we may hold that gratuitously killing a being There may be better answers. We might, for instance,
human embryos are actual human beings in they are immediately exercisable. "like us" is an especially grave wrong-that is, a answer that it is conscious beings who have intrinsic
est stages of their natural development\ (2006a)" To Our conclusion: Every human being, irrespective wrong that far exceeds any wrong we may commit value and rights.Or we could say that it is self-aware
support this claim, they seek to draw a line between of age, size, condition of dependency, or stage of in gratuitously killing a dog or a pig.... We might beings, or beings with an exercisable or previously
what is and what is not a human being in a way that development-or the means by which he or she is say that to kill a being like us is an especially grave exercised capacity to reason, who have this special
does not imply that every cell that could become a produced-is intrinsically valuable as a subject of wrong because it involves the violation of the autono­ moral status. If we give such answers, then "the
human being is also an actual human being.... rights and deserves full moral respect." mous will of the being who is killed.Or we might say nature of the entities" that gives them intrinsic value
An obvious question to ask about this passage is that it is an especially grave wrong because it thwarts and basic rights just is their consciousness or self­
What Entities have a Rational Nature? the hopes and desires that beings like us have for the awareness or exercisable or previously exercised cap­
The final two paragraphs of lee and George's essay whether the notion of "development" is sufficiently
distinct from the notion of "potentiality" to bear the future .... But it is not a being's "rational nature" in acity to reason, and these things are not -accidental"
give the crucial steps in their argument:
Sagan and Singer: The Moral Status of Stem Cells 7
6 CHAPTER 1 Conception and Embryos

on a large scale, especially when the choices will References


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Hofm: The Ethical Case Against Stem Cell Research 9
CHAPTER 1 Conception and Emb
ryos
a

---- 200 66. "Fun d a men talis ts? We? B ad Science, Worse Singer, Peter. 1993 . Prac tical Ethic s. 2nd
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zFjO WY wM DZm MTc 4Mz U2M GU a
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http://� �
National Revi ew Onli ne (19 Octob er), Bovine Embryo Cloning." Biology O; Repr
,r oduc(wn 4 8 ' no . considerable debate about how these scientific develop- destruction of emb ryos for the same purpose. There is
iew .com /?q = M jNm Zm YyN 2Nh NJ FkY
n a tion a lrev 4:7 1 5 -19. ments s h o u l d be no in principle difference between the two killings.2
=(l a st acc e ss e d V. J. Hal l, L. Arm ­
RhN mExM DA2 Yzh iMD Y5YzMyYTI Stojkovic, M., P. Stojkovic, C. Leary. Blastocyst regulated. Part of this Second, it places no restrictions on the use of
1 2 December 2006). strong. M. Herb ert, M. Nesb itt, M. Lako. and A . Mur­ A very early stage of the embryo. debate has focused on biological material from prepersonal human entities
ad A. Cow a n , Jocelyn
Mel ton D o uglas A . , t al . (Ch Bl a st o cyst afte�
d o ch . 200 5. "Der ivation o f a Hum an It contains an inner-cell mass from
e
Kev in Eggan). 20 ? 5- the ethical analysis that can justify the destruction of these entities , as
Atie�za . D ugla s A. Mel ton, and to Don ated Ooc ytes .
o
Som atic Cells a fte r Fusion Heter ologous Nuclear Transfer which stem cells are derived, fluid,
and part on how this long as those uses are beneficial. The derivation of
"Nu clea r Repr ogr a mm ing of 1 1 , no. 2:22 6-3 1. and an outer layer of cells known as
s." Science 309, no. Reproduc tive BioM edic ine
with Human Embryonic Stem Cell Tak aha shi , Kaz utos h i , and Shin ya Y a m a n a ka. 200 6. the trophoblast. analysis should influ­ a new and effective antiwrinkle cream can therefore
5739 :1369-73 . s from Mou se ence policymaking. l be a perfectly acceptable justification for the produc­
Abr am ow-N ewe rly. and "Ind ucti on of Pluripotent Stem Cell
Nagy, A., J. Ross ant, R. Nag y, W. Cult ures by Defined
Cul­ Embryonic and Adu lt Fibroblast In this paper, ·I want to look at both issues and tion and destruction of embryos (or fetuses or infants,
Rod er. 1993 . "Der iv ation of Complet ely Cell 3-76 .
J C Factors." Cell 1 26, no. 4:66 present the best arguments against the derivation of although the price would probably be quite high for
Embryo� ic Stem
t�r�-Derived Mice from Early-Passage ces of Wak ay a ma, Teru hiko , Iv a n
Rod rigu ez, Anthony C. F. human stem cells in a way that leads to the destruc­ the infant-derived variety). . . .
the Nati onal Acad emy of Scien Mom�aerts. 19_99.
Cells." Proceedings of Perry, Ryuz o Yanagimachi, and Peter tion or killing of the human entity of which they are Another type of pro-stem cell argument tries
n . 18:8 424- 28. Cell s. Proceedings
the USA 90, o
rnat ive Methods of "Mic e Cloned from Embryonic Stem a part. . . . to bypass the question of moral status by sh ow­
NIH Ste m Cell Task Forc e. 2005 . "Alte Scie nces of the USA 96, no .
ented by James of the National Acad emy of
Obt aini ng Embryonic Stem Cells." Pres 26- 14984-89.
The discussion falls in three parts. I first present ing that stem cell derivation is justified on direct
lth and Hu :nan
F. Ba ttey, Subc omm ittee on Lab or, Hea mm ee Wak a�am a , Teruhiko, Yoichi Shin kai, Kell
ie L K. Tama­ a critical analysis of the most common arguments consequentialist grounds. If the good that can be
c tion , and Rela ted Agen cies , Com Blan ch ard, Robert
Services, Edu a
:// shiro, H i royuki Niida , D. Caroline showing that the derivation and use of stem cells are attained is of a su fficient
ropr iati ns, Unit ed States Senate (12 July), http nt r Ta emu ra, Makoto
on App o
J. Bl anchard, Atsuo Ogur a , K e a o n morally unproblematic. I then look at the arguments magnitude, then it can out­ Consequentialism
005 07 12battey.
stemcells.n i h.gov/policy/statements/2 Tachibana. Anthony C. F. Perr y, Dian a F. C �lgan, _Pete
r
showing that the derivation and use of stem cells are weigh the killing of a certain The moral view stating that
Dece mbe r 006) . . Clon ing of
asp (la st accessed 12 � . . _ Mombaerts, and Ryuzo Yanagimachi. 2000 problematic . . . . Following this, I analyze the policy number of human entities. It
the rightness or wrongness
Twins by B1sect1on
Ozil, J P. 1983. "Production of Identical Mice to Six Gen erati ons. " Natu re 407, no. 680�? 18- �9.
stalemate that these two opposing views lead to and
of an action or rule or policy
Reproductwn and en.w1k1ped1a . is justified to sacrifice some
of Blasto cysts in the Cow." Jour nal of Wik ipedia . No d ate. S.v. "Hu manze e," http://
is determ ined solely by the
fertility 69, no . 22:463-68. . acc ss d 1 2 Dece mber 20 ?6). consider the suggestion that the stalemate can be for the benefit of others. . . . goodness or badness of the
• Dialog: A org/wiki/Humanzee (las t e e
Cell Con trov rsy. onnor, D. D. Baird, resolved by requiring consistency between different This kind of argument states of affairs that it produces.
P eters, Ted . 200 1 "The Stem
e
nter) :290 -3. Wilcox, A. J, C. R. Weinberg, ]. F. O'C
logy 40, no. 4 (W strong, and B�
J. P. Schlatterer, R. E. Canfield, E. G. Arm
i areas of regulation. may again prove too much­
Journal of Theo
on Ben ett. 200 1. "The ological Supper'. of Pregnancy.
Peters. Ted, and Gaym n f E rly L ss
17 (3 September). C. Nisula. 1988 "Incidence o a o for instance, that it is also justified to sacnfice some
of Stem Cell Research." Scientist 1 5, no. New Engl and Journal of Med icine 319, no. 4: 189- ? 4- adults if the benefits to others are sufficient. . . .
4 1 adsen, S - M · 1979 . "A Met ho d for Cul tured M1crom a • The Reductio of the Pro-Stem Cell
We Clo ne Hum an w-11
Savu" 1escu , J u 1·1 a n . 199 9 "Sh ould - nipulated Shee p Embryos and Its Use to
Pro duce Mono- Arguments
2 5 , n o. 2:87 -
Beings?" Jour nal of Med ical Ethic s
er, J. Kind , Will ia � �
��
­ zygotic Twins." Nature 277, n o. 5694 :298 -300 .
By far the most common pro-stem cell argument is The Anti-Stem Cell Arguments
Schn ieke , Ang elik a. E . Alex and " Nuc lear Tr n spl a nta t i o n in She ep
. Scot t, �a rJ one ---. 198 6.
a
The direct arguments against the derivation of human
Ritc hie. Kare n Myc ock , Angela R Embryos " Natu re 320, no. 6057 :6 � -5- that derivation of human embryonic stem cells is
and Ke1�h H. S.
Ritchie, Ian Wi\mut, Alan Co lman , Shee p Wilm ut, I • A. E. Schnieke, J . McWh1r. A. J. Kmd , and K. morally innocuous because human embryos have no embryonic stem cells, like the standard liberal argu­
Tran sgen i
Campbell. 1997 . "Hu ma n Factor IX
c
g Derived fro m moral status. By analyzing their characteristics, we ment , focus on the moral status of the embryo. The
lei fr om Transfected Fe tal
H. S. Ca mpbell. 1997. "Viable Offsprin
Prod uced by Tran sfer of Nuc ian Cell s." Natu re 385, no. can see that they are not persons and that it is not standard restrict ive argument proceeds from the
0-33 . Fetal and Adult Mam mal
Fibroblasts." Science 278, no. 5346 :213 6619 :810 -13. wrong to kill them , and we can also see that they premise that the life of human individuals is intrinsic­
oll a rd, an� Aus tin
Silva Jose • Ian Cha mbe rs, Steven P p y Yang , X,, Tao Cheng, et a l. (Li.Ying Sung,
Sha?rong �ao,
do not qualify for any kind of "lower" moral status ally valuable at all stages of life. Killing or destroying a
. 6. "Nan og Pr mot es T ra nsfer of Plun oten c
ng. Sadi e L Sm�th,
Smith 200 Hongmei She n, Hui Yu , Yifang S
o o
7096 :997-100 1. . . (for instance, based on sentience) . . . . I call this "the human being is, therefore, always pro tanto wrong (or,
Cell Fusi n." Natu re 441 , no. Inou e, Lynn Ku o , Jm Li� n .
after Ching-Chien Ch ang. Kimiko
o
ng Natu re: The Clas h of Sci­ man M . w_eiss­ standard liberal argument." to put it differently, the act always contains at least
Silver, Lee M. 2 006 a. Challengi New Ao Li, X. Cindy Tian, David P. Tuck, Sher •
the New Fron tiers of Life. 200 6. Differ­ One main problem with this argument is that it one wrong-making feature).
ence and Spiritua lity at
man, Xiangzhong Yang, and Tao Cheng).
Adult St:m Cells proves far too much . . . . First, and perhaps most The most radical version of the standard restrict­
York: Ecco .
es." Nati
-
o� al Revie� Onl''. ne entiated C ells Are More Efficie nt th an
- 200 6b . "Hu man Issu Nuc lear Tr a nsfer. Nature important, it justifies the (nonpainful) killing and use ive argument claims that all human beings have the
-
m/ · q=MJg2 for Cloning by Som atic Cell
9 Octo b r), http :// article .nationalrev1ew.co 323 -28. same value. O n this view, destroying embryos is just
0 e
0ZTRJOTgyZDE Genetics 38, no. 11:1 of any prepersonal human entity from the fertilized
Y2RkND M1M zlkMGMy Mjl3NjhkYmE egg to the prepersonal infant . Such a killing can be as bad as destroying adults, and it seems to rule out
(l ast accessed 1 2 December 2006). justified by any kind of net benefit to others. In the any kind of destructive stem cell derivation from
10 CHAPTER 1 Conception and Embryos .,
Holm: The Ethical Case Against Stem Cell Research l1

embryos (at least if the direct consequentialist argu­ reasons of consistency also to allow similar sacrifice at such an early stage of development that we have no 4. Xis therefore, by parity of reasoning,
ment discussed above does not go through).This view of embryos for goals of equal importance. Let us for way of estimating how many of the stem cell lines that committed
to accept regulation c.
leads to a number of counterintuitive conclusions in the sake of argument accept Harris' analysis.6 How are derived will eventually be used for therapeutic
other areas if it is pursued rigorously. It rules out much embryonic stem cell research would it commit purposes. But, all in all, the considerations here indi­ These "official policy" based arguments may
abortion in most, or perhaps all, cases and would, for us to allowing? cate that on this type of consistency argument the . fail
tf our reconstr uction and completion of
instance, definitely rule out abortions in cases of rape. If the trade-off is one life produced for every six stem cell lines that are actually used would have to _ the under­
lymg argu ents are wrong, but a further
It would also put a stop to all kinds of IVF involving embryos used, probably not very much.First, we have produce major therapeutic benefits.... � possible
mode of failure occurs if the regulation R
the generation of supernumerary embryos and all to remember that we cannot just count lives saved by has been
promulgated in a situation where R is the
destructive embryo experiments aimed at improving stem cell therapies and assume that if we save one life result of a
The Policy Stalemate compromise, either because X has openly
!VF. It would, finally, also commit us to doing much for every six embryos destroyed we will be ethically engaged in
A policy stalemate can be discerned in every coun a compromise with some other group or
more to prevent loss of embryos or fetuses during all right. We can save the same life many times, and try has already taken the because X
normal reproduction. it is questionable whether every new saving counts where public policy has been formulated views of some other group into
on human account when draf
Others, including myself, have argued that, equally. If I am hand-ventilating a patient, do I save embryonic stem cells. Neither side of the deba ting the regulation (for instance
te has to ensure a smooth
although human life is intrinsically valuable at all his life anew with every compression of the ventila­ a �olicy that is consistent with the full implicati passage through the politicai
ons proce s). f a regulatio
stages of life, it generally becomes more valuable dur­ tion bag?7 We also have to take account of the fact that of its �rgume�ts, 10 and neither side seems very � � n is based on a political com-
inter­ promise, It may well
ing the development from fertilized egg to adult human many stem cell therapies are not lifesaving but life ested 1� P:ess1�g for such a fully consistent be the case that no one wants
policy! to efen d or just ify
extending or quality-of-life enhancing. We therefore This suuatton should perhaps in itself mak � the posi tion reached in the regu­
being. This is either argued on the basis of potentiality e us lat10 , except as a legit
or on the basis that as the developing human being need a metric that can take account of all of these war� of trying to decide public policy based pure � imate result of a legitimate
ly on pohucal process..._12
acquires new characteristics the act of killing it entails considerations.One such metric is the QALY (quality consistency arguments (because they seem
to be very A consistency argument based on official
more and more wrong-making features {because it adjusted life year). QALYs have many problems, but sel�ctively employed), but let us nevertheless policy
as good also needs to take into
deprives it of more and more of what it has, as well as none of them should be of relevance to the following ph1losoph�rs try to see how far consistency will account that there are limits to
get us the preciseness with whic
of everything it will get in the future)....3 analysis.Assuming a low-average life span of 72 years when applied to the regulation of stem cell h one can draft regulation
research. and that ethically extra
On a gradualist analysis of the moral status of for a newborn, the unormal" trade-off works out as When con�ist ncy is invoked concerning publ neou s factors play a role....
_ � ic In evalu ating offic
the human being through its developmental stages, 12 life years per embryo, or, if we assume that some pohcy, the claim is that certain features of ial polic y it is also very import­
current ant not to forget that
destroying embryos is always wrong to some degree of these are of lower quality than others so that the r�gulation in a specific area logically (or the ideal policy has to be both
perhaps locally and globally
and cannot be done just for any kind of benefit. One net QALY gain per newborn is only 60 QALYs, we still slightly we�ker, morally) commit regulators to _ coherent and consistent and that
regulate ma 1mal cohe renc e in a body of regulations may be
great advantage of a gradualist analysis applied to stem have a trade-off of 10 QALYs per embryo. new a:eas ma spe ific way for reasons of cons �
� istency achieved by allowing
cell research is that it can explain why destructive use A recent paper from one of the well-known or pamy of reasomng.11 This type of argumen some local inconsistencies....
t occurs I� the context of stem cell research, one parti
of embryos for stem cell production is less problematic groups in the field reports the generation of one def­ m two subtypes.The first subtype is: cular
consistency argument is often put forward
than the destructive use of fetuses, or infants. inite and two possible embryonic stem cell lines from claiming
1. Authority X promulgates regulation R. that, be�ause destructive research usin
But if embryos have value, the question is whether 50 blastocysts (and 101 fertilized eggs).8 If we assume g embryos
2. X puts forward an incomplete argumen � or ce:ta_m purp ses is already allowed in
the benefits of stem cell research are of the right kind that all the cell Imes are true embryonic stem cells, _
t A sup­ JUnsdtcuon, cons � a given
this is equivalent to a 1 in 16.6 ratio between embryo porting R. istency requires that we allow the
and large enough to justify the destruction of some destructive use of embryos for stem cell rese
valuable embryos. The benefits definitely seem to be use and cell line production. 3. A can be made complete by the addition of arch_l3,I4
prem­ Many coun tries that presently allow expe
of the right kind. Helping or perhaps even curing If all three cell lines turned out to be therapeutic­ ises Pl-Pn. ri­
ments on embryos restrict these experiments
people who are suffering from horrendous diseases ally useful, it would thus seem that they would each 4. The �omplete argument A will (perhaps to thos e
is clearly an ethically worthwhile activity and a good have to produce health improvements equivalent to . with the �elated _to improving reproductive technologies and
add1t1on of some further premises that X acce
goal to pursue.4 But what about the magnitude of the at least 166 QALYs to be equivalent to normal human pts) mcreasmg our understanding of the biology of human
also support regulation C. reproduction. Many types of stem cell rese
benefit; is it also large enough? reproduction.9 lt is, however, unlikely that all the cell arch fall
5. X is therefore, by parity of reasoning, com outside this restriction and are therefore not
One way of answering this question is by find­ lines generated will ever have any therapeutic useful­ mitted permit­
to accept regulation C. ted even though the jurisdictions in ques
ing some other analogous activity where we sacrifice ness.Many will only be used for basic research, and tion allow
other forms of research on embryos.
embryos to produce some good. It has been argued others will be discarded because they are less easy to The second subtype is: Can a restriction of embryo research to repr
by my colleague John Harris that �normal" reproduc­ work with than other similar lines. It might also be . oduct-
1. Authority X promulgates regulation R. ive matters be justified?
tion is such an activity.5 For every pregnancy brought the case that the use of adult stem cell lines derived
to term, on average 3-5 embryos fail to implant or in nondestructive ways will become the preferred 2. The justification for R can be reconstructe �he decision to allow embryo research for a
d as restncted
option in a number of therapeutic areas, or we may argument A•. range of research questions could possibly
undergo spontaneous abortion some time during
3. The argu ment A* will (perhaps with � e reco nstru cted as an attempt to achieve consistency
pregnancy.Harris argues that, if we accept that loss be able to create stem cells without the involvement the addition ma situation where embryo
of embryos by engaging in reproduction (or just not of embryos, both developments leaving the derived of some further premises that X accepts) also research is believed to be
sup­ (somewhat) ethically problematic.I
protecting against reproduction), we are forced by embryonic stem cell lines unproductive.We are still port regulation C. S Most legal regu­
Iauon of embryo research occurs within the
broader
Holm: The Ethical Case Against Stem Cell Research 13
12 CHAPTER 1 Conception and Embryos

valid
e technol­ reason to believe that arguments and conclusions
context of regulation of assisted reproductiv b transf err d witho ut modi ­ the fact that we permit the destruction of human 3 . Holm argues that a gradualist positio n on the moral
s could in one of these areas can
ogies and it is evident that these technologie
e e

improved , fication to the other area. let me try illust rat e thi s . embryos in the context of research on human repro­ standing of the embryo is the most plausible con­
only have been developed , and can only b_e _
to
In the area of repro ductive thics the idea that duction to the claim that we ought to permit their ception of moral standing. What would such a view
lauon t�at
if embryo research is permitted. Any legis
e
or destruction in medical research relating to d isease look like? What would moral status in this case be
nologies there is a st rong right to repr o ductive freed om
allows the use of assiste d reproductive tech in recen t and its amelioration? based on?
earc h coul d th re_fore be reproductive liberty has ga ine d currency
and prohibits embryo re s has been
ye ars. If a given permissive legal_ regulati �n
e
ative inco nsi st ency,
charge d with a form of perform (for
deve lopm ent passed because of an appreciauon of this nght
by prohibiting a necessary step in the . uc­
. d teehniqu e. instance, concerning the creation, use, and destr
a nd improvement of a permitte
16 Notes
sphe re f ART [a sist d repro ­
be incon i tent not to allow research tion of embryos in the o s s e
Would it then s s
it is n t imm ediat ely 1 . For a review of the debate, see: Holm S. Going to the roots of stem cell production (for instance, by nuclear replacement) to
oduction: ductive technologie s]), then o
using embryos with no connection to repr
the stem cell controversy. Bioethics 2002;16:493-507. be ethically acceptable. Un less longevity increases enormously
of
s o ci­ obvious that consistency requires the same kmd
Michael Walzer has famously argued that
2. We might try to say that, i f we want to kill the prepersonal it will simply be close to impossible to generate the requisite
sph re of repro ­
permissive regulation outside of the
infant for its stem cells, we need the perm ission of its parents number of QALYs or unadjusted hfe years. This will be the case
" and
e
ety contains several sepa rate "sph r�s of_ju stice for
cann ot,
duction.\A right to reproductive liberty
e and that the parents are then obliged to take the best interests even if you could use the same cell line for a number of differ­
cipl of Justi ce from one
that the application of prin yos of the infant into account (and presumably not allow the kill­
instance, in itself support a permission to use embr
es ent therapies in the same person. It will still be very difficult
e ssar ily warr �nte d.
s phe re to anot her is not nec
1: ing). This may be correct in law, because the law considers to cram 166 QALYs into one life.
as stem
of co i tency for nonreproduction-related purposes, such every born human being as a person, but it is not morally 10. It is important to note that this is true both in restrictive and
Maybe there are also separate "spheres � o duct­
s s
cell research! And , given that the right t repr justifiable on the standard argument. H the infant is not a liberal jurisdictions. The restrictive regulations of the United
ic regula­
o
when we discu s the c nsist ency of publ p�int­
s o
ive libe rty is most often justi fied by argu � ents person. the parents are not proxy decision makers but simply States are not nearly restrictive enough and the liberal regu­
t p er­
tions. This is not as strange an idea as it migh of r prod uc ive pr oJect s
decision makers for a piece of property in which they have lations of 1he United Kingdom not nearly liberal enough to
d ifferent ing to the central position t
haps initially seem . Walzer's argument_ for
e invested time and resources. match the ph1losoph1cal arguments.
al o follo ws that the
s are in the lives o f (most) people, it
spheres of justice is that different social good
s 3. Holm S. The moral status of the pre-personal human being: 1 1 . The following section is a slightly amended section from my
duct iv liber ty
consideration justifying a right to repr e the argument from potential reconsidered. In: Evans D, ed. paper Parity of reasomng arguments m bioethics-some meth­
and take
o
diffe rent and that, unle ss w unde rst nd yos for
f embr
a
cannot directly support the production o
e ConctiVing the Embryo. Dordrecht: Kluwer; 1996: 193-220. odological considerations. In Hayry M. Takala T, eds. Scratching
our analy si of justi ce,
account o f this difference in be
nonreproduction-related purposes (whether they
s 4. Whether the same can be said about basic biological research the Surface of Bioethics. Amsterdam: Rodopi; 2003:45-56.

we will go wrong. He writes:


using human embryonic stem cells is another matter. 1 2 . It is usually accepted that a political decision can be legitimate
research or other purposes) . . . . 5. Harris J . The ethical use of human embryonic stem cells in even in cases where it can be argued not to be optimal.
"No account of the meaning of a social good, or research and therapy. In: Burley J, HarrisJ, eds. A Companion 13. Harris J. The ethical use of human embryonic stem cells in
research and therapy In: Burley J, Harris j, eds. A Companion
of the sphere within which it legitimately operates, to Genetics. Oxford: Blackwell; 2002 : 1 58-74.
6. Most gradualists would probably argue that embryos have to Gcnethics. Oxford: Blackwell; 2002:158-74.
will be uncontroversial. Nor is there any neat pro­ Conclusion more value than one-sixth of an adult life and that the reason 14. The possible policy responses to stem cell research also raise a
on
cedure for generating or testing difjerent ac�ounts. These conclusions are all negauve but should not, we "allow" loss of embryos in reproducuon is not primarily number of other consistency issues that will not be discussed
The positive, but
At best, the arguments will be rough, reflecting the reflection, be terribly controversial.1
9 connected to the value of the embryos. in detail here. These include questions of consistency with
the se
controversial , conclusion i s that a t least some of
7. This issue is quite complex, and intuitions may vary from case regard to (1) legal permission of certain kinds of stem cell
diverse and conflict-ridden characte r of the social
ualist p os­
problems can be resolved by adopting a grad
to case. Here is one more case supporting the !me I take on research and prohibition of public funding of the same kinds
life that we seek simultaneously to un�erstand and repeated savings. Let us imagine that by killing one person of research, and (2) legal prohibition of derivation ofstem cell
adop t
to regulate-but not to regulate until we under­ ition on the moral status of the embryo. If we and removing his organs we can get five organs that are life lines from embryos and permission to import and use cell
good
stand. I shall set aside, then, all claims made on a gradualist position, we will find that we need
saving for others. This might, on a utilitarian analysis, justify lines derived elsewhere.
of expe rime nts on embr yos
behalf of any single distributive criteri�n, f� r no reasons to perform any kind
the killing as shown by John Harris in his famous survival 1 5 . Many public policies seem to indicate that people are "closet
not ruled out tout cour t. lottery paper. But would it also justify killing the one person gradualists" with regard to the moral status of embryos and
such criterion can possibly match the d1vers1ty of but that such experiments are in a situation where we knew that a person would need the five fetuses.
ti ts t prese nt con­
r: - -- -- -
social goods." 18 This means that it is up to the scien s o organs sequentially over a period of 25 years-that is, where 16. It is unclear whether any formal inconsistency would be

ln the same way as d ifferent social goo ds a re dif­ vinc ing arguments that we had five lifesaving episodes, but all ofthese were lifesaving implied. It is still an open question whether subsequent use
destr uctiv e embr yonic I !out court
for the same person? In my book, this would be to kill one of research data obtained in unethical experiments (e.g., the
ferent the different social practices aimed at produ­ e somethi ng out in this
stem cell research is neces- To rulmeans ruling ,t out without
person to save the life of one other person-not k1lhng one to Nazi concentration camp experiments) is in itself ethically
cing these social go o ds are different. The practices way
save five. problematic.
involved m reproduction a nd in securing the goods sary to produce cures and I qualification or comp letely. 8. LanzendorfSE, Boyd CA, Wright DL, Muasher S, Oehninger S, 17. Walzer M Spheres ofJustice: A Defence of Pluralism and Equality.

secured by reproduction are different from t�e p ract� ­


tre atments for importa nt _ __ -- -- Hodgen GD. Use of human gametes obtained from anonymous Oxford: Blackwell; 1983
donors for the production of human embryonic stem cell lines. 18. See note 1 7, Walzer 1983:21 .
ces involved in research. There is thus no pnma fac1e human dise ases. Fertility and Sterility 2001;76(1): 132-7. 19. Even the most insistent liberal and conservative philosophers
9. This, by the way, indicates that it is quite unlikely that this usually shy back if asked whether they want to implement the
consistency argument could ever show individually targeted full 1mplications of their position as social policy.
Study Questions
can­
1. What reasons does Holm give for rejecting what he 2. What is Holm's argument for the claim that we f
not rely on consistenc y argum ents to move rom
calls "the standard liberal argument"? •
McLeod and Baylis: Feminists on the Inalienability of Human Embryos 16

14 CHAPTER 1 Conception and Embryos


�ommodit�.._- .It follows that to commodify something neither individu ate them, nor e xplain how they
man Embryos
ij: mij =I fe
d
minists on the Inalienability of Hu
Baylis I Hypatia 2006; :u: 1-14.
is to make 1t into an ar ticle of commerce.. ..
Impor ta ntly, for our ana lysis, commodification
came to b e , inde pende ntly of those relatio ns. Per­
_
so�s id e mi�y �hemselves, and others identify them,
Carolyn McLeod an Franc;oise can be morally b enign or malign. That is, the act of usmg descnpt10ns whose meanings are d eeply socio­
ersons , actually, � ommo �if�ing a thing can be morally permissible or cultural., .. Feminists tend to speak of "relalional
h human e mbryo persons ( but are not them se lves p imperm1�s1ble depending upon: (1) whether the thing au_tonomy," because relations that foster autonomy
One of the many ethical issue s wit potentially, symbo lically, or otherwi
se) and that this
esearch involves the commod1fied has intrinsic value that is incompatible skills are cruci al to be ing autonomous (M ackenzie
research- especially when the r fact precludes their legitimate com o
m dification.The _
it risks commodif y- -.. with its being either &: StolJ ar 2000; M ey er s 1989; Sherwin 1988). In
d estruction of embryos-is that und erlying assumption is that hum
an embryos could - --
ing, or re s ulti ng in the e same time pa r­
Moral constraint fully o r even pa r- fact, much of the skill a nd
commodification of, that not be commo dified witho ut at th A moral constraint is a moral tially commodified; 2 knowledge of persons origin­
to whom they
tially commodifying the full persons
Relational autonomy
Commodification
wh ich per h a ps o ugh t re striction or prohibition placed on (2) whether moral ates not simply fro m within The v ew according to which
To commodity a thing is to treat it a re inti mat ely conn ected
. certain actions, despite the fact that
as a good or service that can be not to be commodified, of how human constraints exist on th em, but al s o from fe ed­ one's autonomy is constituted
ds In this essay, we aim to make sense such actions promise to produce at least in part by one's social,
exchanged or trad ed for othe r goo namely, women's repro­ mately con n ct e d to , but no t sirab__:_outcomes. the alien ability of the back or informatrnn from
ey; this embryos could be inti -� political and moral relations with
e
and serv ices , inclu ding mon ductive labor and human ., thing from persons· others. • • . B ecause others the members of one's society or
emb ryo s are inalien­
,s problematic in cases where the r epro duc tive tissu es o r identical with, persons, such that or_ (3) whethe r the conse que nces of m aking th e thin� help per so ns to und erstand social group.
thing in question (sex cells, sexual able from person s and
for this reason lone should
a
their derivatives. remin al i s to encourage a lienable a nd of commo difying it are , or are n o t and give meaning to their
services) is not naturally conceived not be commodified. Our main go
of as a commodity. ,.,ts and wom en's h ealth t, a mong feminists favourable. . .. e p e rienc e s, they w o uld suffer int e nse alien a uo n

activist s have ins iste d resistance to this line o f argumen wuhout their connection to these others.
ently r esp ectful of
Feminist
upon the imp o rt a nc e in particular, because it is insuffici Feminis ts tend to agree that co nt exts in which
As regards philosophy, feminism , more generally,
whic h of the first of th ese two women's reproductive autonomy; and Alienability pe r��ns a re ro oted ar e no t merely social, but also
is the philosophical position it is inconsistent with a feminist und
erstanding of per­
examines how the artic ulat ion and issues-the commodifica­ As we suggest, such �lienability is related to commodificanon in that it poht1:al ( at least in the world as we know it). The
solution of philo sop hica l prob lems tion of women's reproduct- sons as relational embodied beings. mforms the assessment o f whether a pa rttcular trade
criticism is compatible with asserting
that some human '.d enmy categones w e use to individuate persons
impacts the oppression and ive labor (Dickenson 2001; for �on�y is benign or malign. Arguably, commodi­ mclude not only so cial roles and psychological traits
ersons, including to
exploitation of women. Dodds 2003).... Of equal embryos are inalienable to some p
restrtctions of so me �c auon is benign when the thing t raded for a price but also membership in gro ups divided along lin e�
conc ern, ho wever, is the some women, which could re quire 1 I norm ti ely alienable to us-meaning th at it ca n o f race, ethnicity, gender, class, ability, and the like.
an embryos. ...
Oocyte
An unfe rtiliz ed fem ale gam ete or sex
potential commodification sort on the commodification o f hum � �

and alienab1lity nghtly lte outside us," (M a rx 1867/1954, 43) for It These groups are privileged or oppressed to var ying
cell (e.g., ovu- m).
- - - of human oocytes and, in Clarifying what commodification can be traded or forfeited without doing h arm to our deg rees....
- - ndi ng the position on
mean is important to understa
particular, of hum n mbr yos. embryo s th t we critique in �e rson.3 We can rid ourselves of our material belong­ For feminists, persons are not only relational in
human commodifying human _
a e a
nts g inst th com mo difi cati on of mgs and rem ain intact as perso ns, for example.But soc10cultura! and so ciopolitical senses, but they are
Argume a a e
this essay....
embryos are many and
varied.The most obvious, per­ we �a nnot divest ourselves of our autonomy or of our a lso embodi e d. This in sight come s from feminist
a n e mbryos are basic huma n ri�hts (for example, to life, security of
haps, sta rt with the premise that hum _ �ttentio n to the bodily experienc es of women, includ­
and conclude that
persons with full moral standing with Commod
iftcation the person, or d1gnuy) without harming our person mg pregnancy and menstruation- exp eriences that
oth er per son s (for e xample, adult humans we take that which At issue in some d ebates about the permissibility of ma ke women's embo died nature undeniable .Serio us
like
nd s ecurity of the p erson),
When we co mmodify something, commodifying human e mbryo s (where embryos are bodily chang es, such_as those that occur m preg­
inali n bl righ ts to lif mak e it into, or treat
is not already a commodity and
e e a
e r arg uments
e a
u d not b com mo difi ed. Oth .. Karl Marx pro ­ not considered persons actually, potentially, symbolic­ nancy, show what havmg a different body can allow
they sho it as though it were , a commodity..
l e
ifica tion of hum an e mb ryo s all�, or otherwise), is whether human embryos are of one to do, or hind er one from do ing, a nd th erefore
that o ppose th com mod expositio n on this
vided the mo st thorough mo dern
e
e start­
\
con clus ion , but th a kind that they are or are not alienable to us (that is reveal how one's embodim ent contributes to o ne's
attempt to draw th am the first place, an
topic.For Marx, "a commodity is, in
e s e
Th clai m is not th a t human separable from us) without damaging our person, and auton my (Young 1990). ... On this feminist under­
ing premise is nua nc d. properties satis­ ?
object outside us, a thing that by its
e e
but r th r, that th y ar e undeni­ 54, so can or cannot rightly be transferr ed to another.... sta ndmg of perso ns as relational embodied beings
embryos are perso ns, e sort or other (1867/19
e
es human wants o f som
a e
nti l per son s, or th ey are fi wh at is malienable to persons, and what therefor�
ably hum an, they are pot h as more
" According to Marx, a commodity
e a
one r ll of th se re a­ 43) ... . should not be commodified, are autonomy and bo d·t
"symbols o f human life." For eve r. It also has e xchange
value Iy
o a e

they sho uld b tr at d as full -fled ged p ersons, than use value, how lue; ... coa t that
Personhood . . 1 .
i�t egnty, a ong with the socio-cultural-political rela-
son s, completely independent of tts use v
e e e a
rded special mora l
a
or at the very l st hou ld be cco ich for Mar x repre­ We focus here o n r ecent feminist perspe ctives o n uons that s upport these states of being....
can be traded for food or for gold (wh
ea s a

for oug ht not to b e commo difie d. f the coat) pe:so nho od, which insist that persons are relational
st atus, and ther ey form "
of sents the "value form" or the "mon
e e o
nts gain st th c mm odi fica tion c mp of beings-socially and politically constituted selves­
Still other argum is a commodity. As such, a commo
dity 1s a
e o
e a
are mor ally inalie n­
o lex
as well a s embodied beings, and th at both of these
Human Embryos as
embry os stipulate tha t emb yos The use valu
things: use value and exchange value
r e
of wh th r th y r e inside or two th aspects of �ersonhood are esse ntial to autonomy.4 Inalienable to Persons
able from us (irresp ectiv phy sical form of the commodity (for
e xample, e
e e e e a

this reas on sh uld not be is the According to most fe minists, perso ns are so pro­ Suzanne Holl and and Cynthia Cohen are among tho se
outside of the body) and for whereas
ch is a synthesis of matter and labor,
o

is that hum n mb yo coa t), whi toundly embe dd ed in soci al rel ation s that one can who have re cently argued that huma n reproductive
commo dified.Here , the claim netary form of the
e r s
the exchange value is the value or mo
a

par t of, r c ntri but to, the perso nho od of full


are a o o e
CHAPTER 1 Conception and Embryos McLeod and Baylis: Feminists on the Inalienability of Human Embryos 17

tissues (including gametes and embryos) a re inalien­ worth-what she calls "derivative dignity -because her claims that reproduction is a "function of special wome
n's distinctiveness as women were purely bio­
»

able to perso ns, and t herefo re should not be com- of "five interrelated features that they bear": import to human beings (1999, 296)" and that the lo gical,
then they might be locked forever int o s ocial
modified ....In "Contested Commodities at B o th "most significant" relations hips are "those affected by r
oles in which they serve men and c h
1. They are deriv e d fr om human beings-beings conception and birth (297)." The first statement may ildren.
Ends of Life," Holland claim s that we, a s pers ons, with a special dignity and worth. For t hese and possibly other reasons, arguments
have inhere nt m oral worth that is incompatible wit h be true of human beings as a species, but is certainly again
st the commo dification of human embryos in
us being treated as commodities , and th at our bod- 2. They are "life-giving-bodily pans ... integral to not true o f every individual human being.But Cohen embr
yo re search that are grounded in claims about
ies and their parts, including gametes and embryos, a functio n of special import t o human beings, uses the point to justify a moral constraint on any the
inalienability of human embryo s are de eply
have a special connection to our perso nhood (2001, reproduction." individual selling her gametes. flawed, particularly from a feminist perspective....
265)....They are constitutive of us and therefo re 3. They convey the distinctiveness of their progeni­ Since pronatalism is already rampant in most The theor
etical problem stems from an incompatibil­
sho uld not be commodified .... H olland spends con­ tors, which itself has m oral worth. women's lives, in particular, feminists should b e con­ ity
between this view of embryos and a feminist con­
siderable time discussing the facts surro unding t he 4. They are "t he medium thr ough which unique cerned as feminists about the pronatalism inv olved c ption
of persons as relational embodied beings.The
downstream commodification of gametes, embryos, human beings are created." in saying that embr yos are inalienable t o persons. politic
al concern lies in t he apparent lack of support
e

and other bo dy tissues; however, in our view, her While many women may see their gametes, embry os, for
5_ They are integral to the formation of special bio­ women's reproductive autonomy.
stance against this practice is poorly developed. F or or fetuses as inseparable parts of their selves, they may
logical, ethical, and social relauons among human In closing, at the outset of this essay we identified
example, she says little about w hy bodies and bo�y no t choose to do so in a meaningful sense; yet even if three
beings (Cohen 1999, 296-8). categories of arguments again st the commodifi­
parts are an aspect of personhood; and she also fatls they did choose to do so, it would not follow, of course, cati
on of human embryos: (1) arguments accor
To buttress he r argument that embryos are that women as a class hold this view, or sho uld hold it. which ding to
to distinguish body parts that may be essential to, or human embryos are persons, and like all per­
constitutive of, persons fr om those that normally are inalienable to perso ns, Holland could appeal specif­ Second, while it is true that claims about the sons ought
no t be treated as property in t he market­
no t (including hair and spit) (Cohen 1999, 29�). In ically to features 2, 3, and 5 to argue t hat embryos inalienability of human embryos do not confer upon place;
(2) arguments that arrive at the same conclusion,
our view, body parts are inalienable to us only mso­ express what is distinctive about us and allo w us to embryos the status of persons, these claims do suggest but
on the basis of more modest claims about
that killing embryos is morally wrong. Killing off any statu the moral
far as t hey instantiate the self, facilitate autonomous fulfill important ends in terms of reproducu on and s of embryos as potential persons or "impo
inalienable (that is, constitutive) part of ourselves would symb rtant
actio n, o r promote b odily integrity, namely, the� having biological relations with others. The �rob�em ols of human life;" and (3) arguments to the effect
_ degrade us as persons and therefore be wrong.As such, that
are "integral to the functioning of human beings. with any argument t hat human embryos are mahe�­ embr os are inalienable to persons and so cannot
We assume that this status is never true for all body able to persons, however, will be that it violat es basic the view that embryos are inalienable to us constitutes rightly y
be considered as objects outside of us that can
bits (although some bits may be integral to the f�nc­ tenet s of feminism .... a clear threat to women's reproductive fre edom. be traded for a price. We have critically examined the
tioning of some, but not all, persons) and specific­ T he claim that human embryos are inalienable to Third, the narrower view that embryos are insepar­ last o
f t hese arguments and shown that embryos are
ally that this status may not be true for gametes and us should be deeply problematic for feminists becau�e able from wo men is incompatible with respect for no
t by definition inalienable to persons (though they
embryos. A crucial difference therefore � ust exist of: (1) the pronatalist streak that runs throug h thi s wo men's bo dily integrity, which is crucial to their may
be inalienable to specific persons, for specific per­
between the claim that pers ons are embodied selves view; (2) the t h reat that _ - - - - auto nomy and which again, includes their ability to sonal
reasons), given a feminist understanding of per­
and the idea that all parts of the bo dy are constitu­ this view represent s t o perceive t heir bodies authentically. Some women do son
s. Hence, from a feminist
tive of the self. Holland fails to name and e xplore women' s reproductive j An individual who promotes th� not see, and do not wish t o see, t heir game tes, embryos, p
Pro natalist

production, rearing and parenting mpectlve, embcyos a,e not Defodo


this difference and so, not surprisingly, fails to pro ­ aut onomy; (3) the lack of or fe tuses as constitutive pans o f themselves, and it de
\ of children.Such �n individual facto no ncommodifiable I A Latin term used in the law
vide an argument for why gametes and embryos are respect 1t shows for dif­ typically takes a dim view _ of is not obvio us that they should, anymore than they
by virtue of being inalienable. meaning "in fact."
intimately connected t o our person hood throug h ferent understandings of I abortion and other such I mits should see o ther non-life-sustaining bits as constituuve Whe
the r femin ists should --------------
-
their c onnection to our b odies.... bo dily integrity among on procreation.
Perhaps Holland c o uld draw o n Cohen's ar�u­ women; and (4) the bio­
,___ __ -- of themselves....
Fourth, feminists would be perturbed as feminists
condemn or accept the c ommodification of embryos
1s still at issue, however... .
ment which is similar to her own in that it too begms logical reductionism that it reinforces.... by the biological reductionism that may be inherent to
the view we are criticizing and that is certainly present If feminists deem embryos to have intrinsic moral
with 0 ur embodim ent. Cohen says that since our First, if embryos are inalienable to perso ns, and
value as potential persons, then very likely the y will
0

'
bodies are the "medium[s] thro ug h which [we] act" for this reas on pe rsons cannot detach themselves in C ohen's theory.7 She cherishes s ome relation­
or "express ourselves,» they have special moral worth from them, then pers o ns can ne ver escape their ships because of mere biology, and also implies that n o t c o nsider them fully c o mmodifiable. If, in the
(Cohen 1999, 295, 291).5 This worth does not extend fertility; they cannot be free to lead a life in which embryos are inalienable to persons because "they ... alternative, feminists simply characterize embryos as
to all body parts, ho wever, but only to those that are reproduction does not occur, or is a n�nissue.On convey the distinctive ness of the human being[s] body tissues that are not intimately connected to our
who produce ...them (1999, 296)." T he "t hey" he personhood, t hen they may decide that embryos are
"inte gral to the functioning of human beings," or �f the view that embryos are inalienable bemgs, peo ple re fully commodifiable. Smee the commo dification of
human person s (291).6 These parts are noncommodt­ disco ver part of who they are as persons by actual­ are not so much embryos, but t he bundle o f g
en es
fiable, acc ording to Cohen.... izing their reproductive potential.Such pronatahsm found within them, w hich suggests a form of gene embryos is an option in either scenario, feminists will
worshipping that is problematic from the per also have to pay careful attention to the consequences
For C o hen, gametes are n o t essential body is inimical, however, to the repr o ductive autonomy spective o f commodification, and try to const rain and direct
parts , inte gral to the functio ning of whole persons. of both wome n and men. Pronatalist views perme ­ of most phil osophers of biology, and that is politic
_ ally this process so that it does not cause social harms, in
Nonetheless, in her view, they have special moral ate C ohen's theory and are particularly evident in threatening to women from a feminist perspective
.If particular the exploitation and o ppression of women.
CHAPTER 1 End of Chapter Resources 19
CHAPTER 1 Conception and Embryos

Sherwin, Susan. 1998. A relational approach to autonomy Young, Iris Marion. 1990. Pregnant embodiment. In Throw­
in health care. In The politics of women's health: Explor­ ing Wu a girl and other essays in feminist philosophy and
Study Questions ing agency and autonomy, ed. Feminist Health Care Ethics social theory. Bloomington: Indiana University Press.
Research Network. Philadelphia: Temple University Press.
3. McLeod and Baylis argue that "body parts a re Tooley, Michael. 1972. Abortion and infanucide. Philosophy
by commodi­
1. What do McLeod and Baylis mean ina lienable to us only in sofar as they instantiate the and Public Affairs 2: 37-65.
ficat ion? self, facilitate autonomous actions, or produce bod­
is it relevant �o
2 What is relat ional autonomy? Why ily integrity." Is this view plausible? Why?
McL eod and Baylis
' the main line of argument that
pursue?

Chapter Study Questions


(1996, PP· 16-18) 1 . Sagan and Singer, and Holm appear to agree 3. It is clear that a conception of moral standing
3. On ina\ienablity and a\ienablity, see Radin
Notes
the "do�nstream
l. For example. there could be restrictions on auon down• and Sandra Lee Banky (1990, PP· 33-3 ) 7 that in some cases the destruction of embryos plays an important role in determining the mor­
commodification" of embryos (that is, comm od1fic human persons, see
Holla nd 2001 , PP 266) 4. For feminist perspectives on the selves of for medical benefit is permissible. What are the ality of the use of human embryos in medical
stream £rom an initial sale or dona tion; _- ists Rtthirt h the Self (1997),
an intim ate conn ecuon to Diana Meyers' edited collection Femirt differences between their positions? Who articu­ research. Consider the various conceptions of
by embryo providers who retain Brison's article there in (1997 , pp. 13:31).
(We discu ss and, in particular, Susan lates the more defensible view? moral standing discussed in the three articles
their embryos despite the act of sale or donation. 5. Here Cohen follows Kant, whom she interp rets as saym g. any
found in this chapter. Which seems most plaus­
this possibility below.) neces sary for the {uncu onin g of the whole 2, In what ways is the feminist analysis found in
the proces� of �ot body part that is
2. Margaret Radin (1996) emphasizes that (292) .
of that perso n" ible to you? What would help you decide in
person ... is endowed with the dignity
Mcleod and Baylis distinct from the analysis
modification can be complete or incom plete , meaning_ t a a huma n bein g and perso n inter - favour of a certain conception of moral standing?
1fied._ W1th _the 6. Throughout, Cohe n uses found in Sagan and Singer and in Holm? In what
product may be fully or only parti ally co� mod
tradi ng of the item, it is changeably. ways is the analysis compatible? In what ways is
former, no restrictions exist on the somewhat plaus-
on an open mark et. Wtth the latter­ 7. It would be inherent to it if among the only nable to per•
it incompatible?
available for excha nge ible reasons for thinking that embryos are inalie
odification -th e relevant
that is, incomplete or partial comm sons is that they bear the distin ctiven ess of perso ns.
market is dose d in certa in respe cts.
Critical Analysis
References embodiment.
: ssays on mind Mackenzie, Catriona, 1992 . Abortion and Consider the following from the article by Holm : of rape. It would also put a stop to all kinds of
Baier, Annette. 1985 . Postures of the mind � Australian journal of Philosophy 70 (2)· 136-
55, !VF involving the generation of supernumerary
Mmn esota Press.
and morals. Minneapolis: University of - and Natalie Stoljar, eds. 2000 . Relat ional autonomy: "The most radical version of the standard restrict­
embryos and all destructive embryo experiments
issis m, femi ni ity and
Banky, Sandra Lee. 1990 . Narc . : Stud�ies '.m the Feminist perspectives on auton omy, agenc y, and the social ive argument claims that all human beings have
aimed at improving !VF. It would, finally, also com­
alienation. In Femi ninily and domm atwn
self New York Oxfo rd Univ ersity Press . the same value. On this view, destroying embryos
ledge . mit us to doing much more to prevent loss of
phenomenology of oppression. New York: Rout Marquis, Don. 1989. Why abortion is immo
ral. Journal of isjust as bad as destroying adults, and it seems
Tra uma , memory, embryos or fetuses during normal reproduction. "
Brison, Susan] . 1997. Outliving oneself: _ Philosophy 86 (4): 183-202 .
to rule out any kind of destructive stem cell der­
nists self, ed.
and personal identity. In Femi el Moore and
rethi nk the
Marx, Karl 1867/ 1954. Capital. Trans. Samu
ivation from embryos , . . , This view leads to a Outline Holm's argument in your own words, pay-
ers. Boul der, Colo .: Wes tv1ew Press. ow: Progress.
Diana Tietjens Mey Edward Aveling, ed. Frederick Enge ls. Mosc number of counterintuitive conclusions in other ing particular attention to the premises that he relies
pieces of hum ans
Cohen Cynthia. 1999 . Selli ng bits and Meyers, Dian a Ti tj ns. 1989 . Self , socie ty, and p ersonal areas if it is pursued rigorously. It rules out abor­ on to support his main conclusion. Choose one of the
revis ited. e
to �ake babies: "The gift of the magi"
nal e
Jour s.
choice. New York Columbia University Pres tion in most, or perhaps all, cases and would, for premises for evaluation. Try to think of at least one
of Medicine and Philosophy 24 (3): 288- 306. , . Boul der, Colo .:
wome� s alie na­ - ed 1997. Feminists rethi nk the self. instance, definitely rule out abortions in cases objection to this premise.
Dickenson, Don na. 2001 . Property and Ws�w ��
BwethJCs 1 5
tion from their own reproductive labour. Nussbaum, Martha C. 1992 . Human functioni
ng and s��1al
(3): 205-17. ialism . PohtJCal
ifica tion , a �d justice: In defense of Aristotelian essem Case Study
Dodds Susa n. 2003 . Women , com mod Theory 20 (3): 202-46. . .
emb ryon ic stem -cell rese arch . In Biom edica l eth1Cs odltles: The
ed. Jame s Hum ber and Robert Radi n, Margaret Jane . 1 996. Contested comm On 29 March 2004, the Assisted Human Reproduction an embryo for the sole purpose of conducting medical
cell research, , and other
reviews: Stem
. trouble with trade in sex, children, body parts
F. Almeder. Totowa, N.J.: Humana Press ersity P �ess. Act received Royal Assent in the House of Commons in research on stem cells and other related matters. The
o new fertil ity
.. things. Cambridge , Mass.: Harvard Univ
Donchin, Anne . 1996 . Feminist critiques � Scheman, Naom i. 1983 . Indiv idual ism and the obJec t� of Ottawa. The Act regulates human reproductive research, only situation in which it is permissible to use and destroy
technologies: Implications for social policy.
Journal of s among other things. It maintains that it is permissible to human embryos in the conduct of this research is when
psychology. In Disco vering reality: Femi nist pers p ective
Medicine and Philos ophy 2 1 (5): 475- 98. p ilo op y create an in vitro human embryo for the purpose of pro­ the embryos in question are "surplus" embryos created
on ep1stemolog_y, metaphysics, methodology'. and � �
h
es at both ends
Holland, Susan. 2001 . Contested commoditi ed. Sand ra Hard ing and Mern ll B. Hmukka. ducing a human being or for the purpose of improving or by in vitro fertilization having the following character­
of life: Buying and selling game tes, embr yos, and body of scien ce,
providing instruction in assisted reproductive technolo­ istics : they are no longer wanted by those for whom
nal 1 1 (3): 263-84. Boston: D. Reidel.
tissues. Kennedy Instit ute of Ethic s jour gies. However, it forbids the creation of a human embryo they were created, the embryos are freely and consen­
for any other purpose. In particular, it forbids creating sually donated by those for whom they were created,
Marquis: Vvhy Abortion is Immoral 23
CHAPTER 2 Fetuses

convinced of the correctness of their own p ositions , do not explain why it is wrong t o kill infants or
�eriod of its life be fore t���:e:�:��� 0�:::��:;��::;,:�:;: f�:�: �:v��:;t;�e ::::�i�: why they a re not successful in convincing th e ir young childre n or the sev erely r e ta rde d or ev e n
its d evel pment a om ester of pregnancy) opp onents, and why, to others, this issue seems to be p e rh aps th e s e verely mentally ill. Th ere fore , we
; : at some point in the second trim
to f eel p �easure an pai (which occur� .ln the later stages of pregnancy a
unresolvable.An analysis of the nature of this standoff se e m again to have a sta ndoff. The anti-abortionist
and therefore a right to life
a fetus has mora \ 5ta nd1·ng , · · h"1s case 1s · more suggests a s trategy for surmounting it. c harge s, not unreasonably, that pro- choice principles
I' e appropriate. Aboruon m t
e t . tive approach to ab ort t· on t· s thereror at to w man ,
s h alt h or Consider the way a typical anti-ab ortionist argues. concerning killing are too n arrow t o b e a cceptable ;
, and onl� a serious thr e a o e
::; (t�;:�� not identical to) infanticide She will argue or assert that life is prese nt from the th e pro-choicer charges, not unreasonably, that anti­
well eing_ or s i
g th e m orality of abortion turns
moment of conception or that fetuses look like babies aborti o nist principles concerning killing a re t oo
: 1 ��:;::! ::��:: :�1�:�:i:;�����:;m inin or that fetus e s posse ss a ch ar ac teristic such as a broad to be acceptable ....
a e 1 a
�n w::i:: ;;not a fe tus ha:n::�!t t:��:�����!:;����:� :; ;n ;r;;;e ����;d��;::, genetic code that is both necessary a nd sufficient for Pa ssions in th e abortion d e bate r u n high.
hves m a remote north em co y being human. Anti-abortionists seem to b elieve that There are both pl ausibilities and difficulti es with
to procure a safe, le g 1 ab or.10 · Th' la ces serious

5;�;:1
she must travel significan t dist ances : : (1) the truth of all of these claims is quite obvious, the standard positions. Accordingly, it is hardly
a
; c r thel:;men who live
:estricti.ons on th� �eproduc ��:�::::n:
n
:r :�: ;at:: :t�l fetus s eem not to t ake and (2) establishing any of these claims is sufficient to surprising that partisans of either side embrace with
:�::

!�:
m these com munmes.Abst d
· of ( p e cially show that abortion is morally akin to murde r. fervor th e moral g eneralizat ions that supp o rt the
ount of this, d th re r e g
acc an e
fo � � �;� ����:��;:����s:���; th ;;::;;��� : n th�:chapter. A st a ndard pro-choi c e stra t e gy e xhibits conclusions they preanalytically favor, and rej ect with
unwante d) preg��ncy. � ar are. i th t a legal policy similarities.The pro-choicer will argue or assert that disdain the moral ge nera lizations of their opp onents
� to G estate," Little argues a
ln her article_ Aboruon. numacy, and the Duty preg nancy is fetuses are not persons or that fetuses are not rat ional as b eing subj e ct to ine scapable difficulties.It is easy to
t�.Thi . s is harmful to women because
restricting aboruon forces women to gest� . ed and enmeshed with a fetus.To b e agents or tha t fetus e s ar e n ot soci a l beings. Pro­ belie ve that the c ounterexamples to one's own moral
emg mtert:'1�
a kind of intimacy: it involves a wo�an er human b eing, a nd choic ers s eem to belie ve that (1) the truth of any of pr inciple s are m erely temporary difficulties that will
ed to b e mum ate with anoth
forced to gestate is tantamount to bemg forc . .
acy. In addition she these claims is quite obvious, and (2) establishing any dissolve in the wake of further philos ophical research,
e x, itself a form of forced mu1:1-
is therefore harmful like non-consensual s of these claims is suffi cient to show th at a n abortion and that the counterexamples t o the principles of one's
tion involves dev elop'.ng an account of the
that a full account of the morality of abor is not a wrongful killing.. .. opp onents are as straightforwa rd as the contradiction
at the 1:1-er� biolo gi
t
�!�::f the duty to gestate.Her view is th �: !i��:��; ::::�:�:�u:.�;;:e: N ow, how might one deal with this standoff? The betwee n.-A..a.Qc!. 0 propositions in traditiona l logic.
emer 1
and a fetus generates a duty to be ope� to � �:;t�\et a fetus make use of one's body standard approach is to try to show how the moral This might sugg est to an impartial observer (if the re
u t e
a t principles of one's opp one nt los e their plausibility a re a ny) tha t th e aborti on ,.
i:�:�ing a lived personal relationship _si mil r � �:
�:p\��:::� !��:�;n� ;r:ia�;�:�;;� n c unde r analysis.lt is easy to se e how this is possible. issue is unresolvabl e . A and O propositions
b h'ldren and parents and the ex1st e e o t
etus. On the one hand, the anti-abortionist will d efend a There is a way out of this In traditional or categorical logic,
::�e �f the relation ship 'one is in with the f
;�;��:�� �::�5°���;e;:::�t�:::r t��: moral principle concerning the wrongne ss of killing apparent dialectical quandary. an 'A proposition' is a statement
that is both universal and
which te nds to be broad in sc op e in order that even Th e m o ra l g eneraliz ations affirmative (e.g., 'All fetuses are
fetuses a t an early stage of pregnancy will fall under of both sid es a r e not quit e persons•) and an 'O proposition'
it. The problem with br oad principl es is that th ey correct. The gen e raliz ati ons is both particular and negative

M•UIW Why Abortion is Immoral ; 86: 183-202. oft en embrace too much. In this particular inst a nce, hold for the most part, for the (e.g., 'Some fetuses are not
th e prinople "It is alwa ys pr ima facie wrong to usual cases. This suggests persons•). When they contain
Don Marquis I The Journal of Phil
osophy 1989 the same subject (e.g., "fetuses")
tak e a human life" s eems to e ntail that it is wrong that they are a ll accidental and predicate (e.g., 'persons"),
when the li.fe of a to end th e e xist ence gener a liza tion s, that the A and O propositions are natural
rar ex ptio ns. befo r e imp l an tation or ab ortion
The vie w that ab ortt o n is, with e ce
cy or abortion aft er
Prim a tacie o f a living hum a n moral claims made by those contradic1ories, meaning that
li tl su?p rt in the w oman is threat ened by a pre gnan A Latin both statements cannot be true.
seri ously im moral has rec e ived t e o
y will not phrase meaning at first sight canc e r-cell culture, on b oth sid es of the dispute
essay s e ts rap e , may be m orally permissible.This e ssa or until proven otherwise.
re cent philos ophical literature.... This purp on the gr ounds t hat do not touch on the essence
explore the casuistry of these hard cases.Th e ose
that purp orts to show , as ':ell �s the c ul t ure i s b o th of th e matt er....All this sug:gests that a nec e ssary
out n gum ent -
of this essay i.s to develop ,.- - - - -
a ar
nt in thic s c n show , t hat ab oruon ts, living and human. Ther f o r , it s ms that the anti­ c ondition of res olving the abortion controversy is a
any argu me e a e e ee
seri usl� imm�ral, that a g e n e ral a rgu m e nt Casuistry
e xc ept pos s ibly in ra re cas e s, o
J Reasoning about ethical matt ers aborti onist' s fav o red principl e is t oo bro ad. more theoretical account of the wrongness of kiiling.
mora l q. t g ry as killi ng a n mn ocent f or the clai m th at the case -by-c ase basis , by On the other hand, th pro-choi r wa nts t o In orde r to d e vel op such an account, we can
it is in the sam e e o on a e ce
t is b s e d on a ove r whe lming majo rity I nnin g with judg men ts abou t
adult hum an bein g. Th e a rgum en a begi find a m o ra l principle c onc e rning th e wrongness of star t fr om the following unproblematic assumption
r r not b rtion of deliberate abortions are \ c,earer cases and then applying
major assumption: ... th a t wh e th e o a o killing whi c h t ends to be narrow in s cop e in order concerning our own case: it is wrong to kill us. Why
t�er or seriously 1�moral. this reasoning to difficult ethical
is -m orally permissible stands or fall� 0� �he
not a fetus is th e sort of being whose hfe It i
s seriously A sket ch o f st a nda rdI cases involvfng exceptions _to and
amo ngs t mor al p 1
th at fetuses will not fall under it.The problem with
narrow principles is that the y often d o not embra ce
is it wrong?
What primarily make s killing wrong is ... its
a nti abortt on a nd pro•
�nfhcts nnc

wro n g to end. . enough. Hence, the ne eded principles such as "It is effect on th e victim.The loss of one's life is one of
will n gle t issu es of gr eat tmp o:ta �ce choice arguments exhibits . . prima fa ie seriously wr ong to kill only p e rs ons" or the greate st losses one can suffer. The loss of one's
This essa y c metn s
how those arguments p osse ss certain sym
e e c
thics of ab ru n. S m an ti-aboruon'.sts "It is prim a facie wrong to kill only rational ag ents" lif e deprives on e of all the e xp e rience s. act ivities,
to a compl t o o e
are so
that e xplain why partisans of those positions
e e e o
certa i ab rti ns, su h as ab oruon
will allow that n o o c
Marquis: Wny Abortion is Immoral 25
2.. CHAPTER 2 Fetuses
e loss �f standa rd fetus, if killed, is, however, at least as great value-in it. Furthermore, my future can be valu­
t wou l the rwi se ha�e In the second place, the claim that th a loss as the loss of the future to a standard adult able to me even if I do not value it.This is the case
projects, and enjo ym nts tha � � ure of one s
one's future is the wrong-making feat
e
refo re, k1ll g som eo ne ts human being who is killed, abortion, like ordinary when a young person attem pts suicide , but is rescued
constituted one's fut� r_e. The m
n g killed e ntails the possibi
lity t hat the futures of
th kill ing i flict s (on e ?0 bei killing, could be just ified only by the most compelling and g oes on to significant human achievements.
wrong, primarily because mammals on our ow n planet
e n
im. To des cnb e some actual nonhuman reasons. The los s of one's life is almost the grea test Such young people's futures are ultimately valuable
the greatest possible losses o the vict sly wrong to
are sufficiently like ours that it is seriou
n

ss of life ca be mis l eading, how�ver. misfor t une that ca n happen to one. Presumably to them, even though such futures do not seem to be
this as th l n
... •
does not by itself kill them also
e o
abortion could_ be justified in some circumstances, valuable to them at the moment of attempted suicide.
The change in my biological state ss o� �y In the thir d place, the claim that the loss.of o�e
s
me wro ng. The ffec t of the lo of one s be1 g only if the loss con sequent on failing to abort would A fetus' future can be valuable to it in the same way.
make kilh�g e _ ng-makin g feature �
those _acuv1t:� future is the wro be at least as great-1 Accordi ngly, morally permissible Accordingly, this a ttempt to limit the anti-abortion
biological life is the loss to �e of all killed does ot e nta il, as san ctit y of hum a n ltfe
nts, which wo . n
abortions will be rare indeed unless, perhaps, they argume nt fails....
projects, experiences, and enjoyme nal hfe . theories do, tha t active euthanasia
is wron g. Per-
ted my futu re per s � - -.- -,1 occur so ea rly in pre g na ncy that a fetus is not yet In this essay, it has been argued that the c o rrect
otherwise have constitu son s who are s ever e ly 1 - -
erie nce s, and e joy ments definitely an individual.Hence, this argument should ethic of the wrongness of killing can be extended
These activities, projects, exp
n
y of human hfe
o thei r ow n sakes or are mean s to
a nd inc ura bly ill,. who Sanctit ers of the sanctity of human be taken as showing that abortion is presumptively to fetal life a nd used to show that there is a strong
are eith e valu able f r
futu re of pam a_nd j Hold
r
it own sak e. So e face a li f e doct rine typ'ically believe that very seriously wrong, where the presumption is very presumption that any abortion is morally impermis­
something else that i s valuable for s
but

will des pai r, a nd who wish hum an life has a unique and
m now , [ strong-as strong as the presump tion tha t killi ng sible. If the e thic of killing adopted here entails,
parts of my future are not valued by
e
older �nd as my to die , wil l not hav e specialval simplybyvirtueof
ue anothe r adult human being is wrong. however, that contraception is also seriously immoral,
come to b e valued by me as l grow ed, J_a� suf fered a lo ss if the y the factthat it 1s human life. There
citie s cha nge . � n- � �tll be differences b�tween How complet e an account of the wrongness of then t here would appear to be a difficulty with the
values and capa ld hav e are killed. lt is, stric tly may well
I ow valu whi ch wou o nen ts on the precise way killing cl.oes the value of a future-like-ours account analysis of this essay.
deprived both cf�:Yh�t_ n e
wh at sP eakin g ' th e va lue of
a its exp
per son al life . , b�t also . life acqu i r es this-- value.-- -- have to be in order that the wrongness of abortion is But this analysis does not entail that contraception
oeen part of my futu re l am hum a n' s futu r e w h 1c h
L__ -
refo e, wh n I die, a consequence? Thi s account does not have to be an is w rong. Of course, con trace ption prevents the
I would come to value. The r e
ng in
re.Inflicting this makes killing wro account of the necessar y conditions for the wrongness actualization of a pos sible future of value. Hence, it
deprived of all of the value of my futu this theo ry. Thi b ing so, ki.llin g doe s not � eces
sanly
akes killi ng me wrong.
s e
me i ulti mat ely wha t m a d dy g ... . of killing. Some persons in nursing homes may lack follows from the claim that futures of value should be
loss on w rong some persons who are sick
s n m
the case , it wou ld se em that ':hat �akes the w ong valuable human futures, yet it may be wrong to kill maximized that contraception is prima facie immoral.
This being In the fourth place, the account of
r nes s

lt hum an bein g prim a fa te sen ously ight forw rd y them for other reasons. Furthermore, this account This obligation to maximize does not exist, however;
killin g any adu � of killing defended in this essay does stra
a �
••• does not obviously have to be the sole reason killing furthermore, nothing in the ethics of killing in this
wrong is the loss of his or her future. . the e ntail that it is prima facie seriously wro ng to kill
wrong ts paper entails that it does.The ethics of killing in this
- The claim that what makes killing two chil dren an d infants, for we do presum
e that t�e_y is wrong where the victim did have a valuable future.
is dire ctly sup por t d by is This analysis claims only that, for any killing where essay would entail that contraception is wrong only
loss of the victim's future e we do believe that tt
e
h ory ex lam s h av e futures of va lue. Sinc the victim did have a valuable future like ours, having
considerations.ln the first pl c , this if something were denied a human future of value by
� fenseless little babies, it is import�nt
a e t e

rd kill ing one of the worst of cnmes. wron g to kill de killi n g e asily that future by itself is sufficient to create the strong contraception.Nothing at all is denied such a future
why we rega that a theory of the w ron g ness of
as

eci lly wro g, bec au se it depr i�es the presumption that the killing is seriously wrong.... by contraception, however.
Killing is esp n
. ..
oth er cnme. In acc;ount for this.
a
. One strategy for avoiding these anti-abortion Candidates for a subject of harm by contraception
vict im of more than pe rhaps any wh o Th e clai m that the primar y wrong makmg feature
S or can cer conseque nces i nvolves limiting the s cope of the value fall into f our categories: (1) some s perm or other,
the second place , people with AID _ _
mg is of a killing is the loss to the victim
of the value of
g beli eve , of cou rse, that dy the et htcs of of a future argument. More precisely, the s tra tegy (2) some ovum or othe r, (3) a spe rm and a n ovum
know they a re dyin e loss its future has obvious conse quence s for
. The y beli eve that th involves arguing that fetuses lack a property that is separately, and (4) a sperm a nd an ovum together.
a very bad thing for them
e have abortion. The future of a
standard fetus includes a _set
they wou ld oth erw is essential for t he value-of-a-future argumen t (or for Assigning the harm to some sperm is utterly arbitrary,
of a future to them that . of experiences, projects, activities,
a nd such w�1ch
d is wha t mak es th eir premature death a lt human bemgs any anti-abortion argument) to a pply to them. for no reason can be given for makmg a s perm the
exp erie nce are iden tical with the futu
re s of adu
very bad thin g for th m. • • • re of young �hildren. One move of this sort is based upon the claim that subj e ct of har m rather than an ovum. Assigni ng
and are identical with the futu
e s
es killi ng wro ng i s the l�ss a necessary condition of one's future being valuable the har m to some ovum is utterly arbitrary, for no
The vi w tha wh t mak cient explam w�y it
to
gams Since the reason that is suffi
e t a
of th v lue of th vict im's futu re time of birth is that one values it. Value implies a valuer. Given reason can be given for makmg an ovum the subject
to the victim is wrong to kill human beings after the_
e a e
n ome of its imp lic t ions �re this one might argue that, since fetuses cannot value of harm rather than a sperm. One might attempt to
additional sup por t whe � It follows that
is a reason that also applies to fe tuses,
s
t plac , it i inco mp auble w1th their futures, their futures a re not valua bl e to them. avoid these problems by insisting that contraception
examined. ln the firs wro�g. .
abortion is prima facie seriously morally
e s

ng to kill only bein gs wh � ar e


the mv �lt_d Hence, it does not ser iously wrong them deliberately deprives both the sper m and the ovum sepa rately of
the view tha t it is wro sa Thi s arg ume nt doe s not rely o n
pos sibl that ther e xist s, tt ts to end their lives. a valuable future like ours. On this alter native , too
biologically human. It is
e
e that, since it is wrong to kill person
e
pl n t who s m mbe rs infe renc Thi s move fails, howe ver, because of some many futures are lost. Contraception was supposed
differen t species from another � category that
e
wrong to kill poten tial persons al�o..The
a e

a futu r lik our s. Sinc e havin g a future hke that is is th category of ambiguities. Let us assume that something can not to b e wrong, becaus e it deprived us of one future
hav e e e
is moral ly central to this analy s e
t mak s killi ng som eo ne wrong, this theory • • • be of value unless it i s valued by someo n e. This of value, not two. One might at tempt to avoid this
is wha re like ours.
bers of su�h havin g a valuable futu
e

entails that it would be wrong to kill mem Of cou rs thi s valu e of a futu re-like -ours
does not entail that my life is of no va lue unless it is problem by holding that contraception deprives the
, this th ory is opp ose d to the clai m e
bortion is valued by me. I may think, in a period of des pair, that combination of sperm and ovum of a valuable fut ure
a species. Henc
arg um en t, if ;ou nd, shows on ly that �
e e
ogic ally hu a n ha� g r_ eat my future is of n o worth whatsoever, but I may be like ours. But he re the definite article misleads. At
that only life that i biol � ng m any and
prima facie wrong, not that it is wro
s
whi ch man y antt -abo ruo mst s wrong because others rightly see value-even great the time of contraception, there are hund reds of
moral wor th, a clai m e future to a
• · · all circumstan ces. Since the loss of th
have seemed to adopt.
Sumner: A Third Way 27

CHAPTER 2 Fe1uses
A consequence of the uniform approach adopt ed grounds. Late ab ortions will have the same moral
been to set out an
and
o vum ill s The purpose of this essay has ness of by both of the established views is that neither ca n status as i n_(anuc, · · de, exce pt for the difference made
e sumptive wrong
ion
o ne (released)
m
million s o f sperm, i o arg um ent for the serious pr a t tach any sig n ificance to the d eve lopment of the iet us by the phy�1cal c onnecti on between fetus and mother.
all of these . Th e re s n
umption that the moral
of possible c ombin ati ons of th l ss t abo rtio n subj e ct to the ass dunng g estauon. · Yet this development is the most A t h1td w a y with
the subj ect o f or falls on the moral
o
e o -:-:----------
act ual combination at all. Is o ne ? This permissibility of abortion stands .
t'-- obv10us fe ature of gestation. A view that avoids this aborti on is thus a m o derate Infanticide
be a merely possible com bi ati n? Wh ich possesses a pro perty,
status of the fe tus .Sin ce a fetus
n o The intentional killing of an infant
sub j ct of ha rm is defect will base the a n d di ffe re nti a 1 v iew
alternative do es not yield an
act ual ich in adult human b eings or neonate.
e
tra c p i on is the p oss e ssion o f wh Gestation
(differ e ntial) m o ral combining elements of th�
, the immorah ty of co n e t
an adu lt hu ma n b eing The period from conception to birth
either .Accordin gly
-li.ke-ours arg ument
sufficient to make killing standing of the fet us libe ral view for early abo rtions with ele m_ e _n-ts_ o_f_(_a_
the los s of a future g ... . dur ing wh_ic� the fetus grows and
not entailed by ri1y identifiable
wrong , abortion is wr on
e�lops ms1de the womb; pregnancy. at least in part on its w eak:ne d version of) the conservative vi ew for lat e
h r s n arb itra
si m ply because t e e i no on
. : level of de velopment a b oruons Th e p olic Y th at a mod e rate vi ew will
e of c ontrac eption
subject of the loss in the cas .
will thus assig n und e veloped fetuses a moral statu�

support is a mode rate policy, permissive in the early
\
a I� to that o f ova and spermatozoa, whereas it will stages o� p_ regnancy and more restrictive (though n ot

Study Questions as�1gn


of mfants.
d e ve loped fetuses a moral status akin t o tha t as re strictive as conse rvatives think appropriate) in
the lat er stag es . ...
ns doe s this permit
kes kill ing wr ong? an individual ." Which abor tio So far, then, an adequate view of the fetus must be "W_e are assumi ng that for a cre ature to have moral
is, wh at ma
l. According t o Marqu (if any)? gra�ual, differential, and developmental.It must also b e � tandmg is f�r it to have a right to life.Any such right
ument t o th e e ffe
ct
2. Marquis pro duces an arg nk tha t, whil e m ost
are seri ous ly 3. Why do es Marquis thi tion
denved from a satisfactory criteri on of moral standing n:1 oses dun es on moral agents: these duties may be

tha t the vas t maj o
rity of abo rtio n s
s ar i al, th e use of c ontr acep Such a criteri on must be general (applicable to bein � eu e_ � ne gative (not to deprive the creature of life) or
so me abortion e mm or
al. H w ver , h e int imat e s tha t i s ble ? ot h r than fet_u� es), it must co nnect mo ral standi; po�1t1ve (t o supp or t the creature's life). Possession of
im m o r o e
is morally p er m s i _ e
s ar p rm i sib le wh en "they o ccur so wtth th e empmcal properties of such beings and � a nght to life implies at least s ome immunity a ainst
abor tio n e e s
itely
pr gnancy tha t a fetus is not yet de fin m ust be mora lly relevant. Its moral rele vance i� part!� atta k by_ others, a nd p ossibly also some en titl!men t
early in e

t- -- - teStable by app e al t o t e aid of o the rs.As the d u ties may vary in
-
Empirical -- -- - • t o intuition....An st rength, so may the c o rresponding rights. To have
Empirical properties are those that adequat e v ie w of s ome moral standing is to have so me right to 1'f
ls So Wrong with
Notes
ath a l97 7). ch. 3; and Robert Young, "What can be discovered by means of 1he th e fe tus promise s a whether or n o t it may be overridden by the rig���
on this matter by Jon UV, 210 (1979):515-28.
n
l. I have been most influenceding Lives (New York: Penguin , Killing People?" Philosophy, senses or by means of standard
scientific methodology. moral ly significant of others. �o have full moral sta nding i s to ha ve the
Glover, Causing Death and Sav
division between early st r ong_ est nght to life possessed by anyone, the ri ht
abortio ns (before the to hfe of the paradigm person. D epending on o!e•s

■iMt•■
Intuition
thr esh old stage) and moral theory ' th'is ng · ht may or may no t be inviolabl e
A Th ird W ay ort ion {3r d ed .}.
A moral intuition is a sober, reflective
l a te aborti ons (aft e r
.
and mdefeasible and thus may or ma y n ot imp ose
m of Ab attitude regarding some moral or
yn e Su mn er I Dw yer S, Feinberg J. The Proble th e thr eshold s tage). absolute duties on othe rs.
L. Wa evaluative matter, e.g., that slavery is
ort h Pu bli shin g Co mp any; 1997: 98-117. wrong and that children have moral I a lso pr omi s es To which creatur es should we distribute (some
Wadsw t
1 b ord e rlin e c a s e s
standing. de gree of ) moral standing?· · · · A cm · enon
. of sentience
ht s vocabulary favore d .
pu blic dis cus sion precise by ad optin g the rig ppose (during the threshold (or c on scious ness) is promis ing. Sentience is the
... In most c ountries i n the W , views .We will su
of the established
est
f by bot h stag ). �h : v r that stage is locat ed , ab o rtions that f�r feeling or affect. In its most pri mitive form
by the domin anc e o
g is equivalent to e e e e
�apac1ty
_
of abortion has been dist orted " tha t hav ing (s ome) moral stan din
p ec de It will be private att rs, si ce the fetus will at
-
tt 1� the ab1luy to experience sensations of pleasure and
poused by "pro -choic e
c entral issue in the e m e n
two view s .The liberal view, es hav ing ( om e) right to li fe . The � at �tage lack moral st a nding. Thus the provisions of
y) ab orti on is alw ay pam, and thus the ability to enjoy and suffer. Its more
s
e
is then whe ther fetuses hav
s
_
g r oups. holds that (v oluntar t th y morality o f ab ortion � e liberal view will apply to early abor tions: they will de vel o pe d forms mclude wa n ts ' ai ms , and des1re s
.
heref r ) th e onl _
morally inno cuous and (t
a
o e
i n moral standing i n thi
s sense.l b � morally mn o cent (as lo ng as the usual conditions (and thus the ab'lI ity to be s a tisfied and frustrated)·
one which tr ats abo r aiv
and also the mo re
t o
acc eptable abortion policy is
e n e
ry . Th Th e conse rvative view, f temal cons ent, etc.,a re satisfied) and ought to be
.
at t itudes, taste s, and values·• and mo ods, emo tions
. '
elective sur g e se po int a
ew, selects a pre ci
e
as a n other variety of minor o p , h lds s io n s of the liberal vi
ral
�ega � Iy unregulated (except for rules equally applicabl
.
senu��nts, and passions.Consciousness is a necessar
'
"pro-life" gr s o ver
e thresho ld of mo
co nserva tive view, espoused by
u
) (co c pti o n , birth, etc) a s th all oth r edical procedures). Early abortion wil�
morally serious and (th r for e n e
fr o m no e m c�nd1�1on of _sentience, for feelings are states of min�
t ha t the t ra n sit ion
e e
that abortion is always ich sta nd ing , im ply ing � av th s_ a m m ral status as c ontrace ption.
ion policy is one wh uptly.In doing e e e o o which their owner is aware. But it is not sufficient·
tha t the only acceptable abort sta nd ing to ful l s tan ding o ccurs abr
Aboruo s that foll ow the threshold stage will be it is a_t le ast possible in principle for beings to b�
ety of homicid e. den events than
n
treats abortion as another vari o the y r t mo r e weight on these sud .
in terp ers onal matt ers, since the fetus will at that s tage
of ab orti on is the conscio us (percipien t , £or mstanc e , or even rational)
es
The c entral issue in the morality
s
e aring.A view tha
t avoids this .
cr atu r has th ey are capable of b ss e s "'.oral _standing.Thus the provisions of the whil e utte rly lacking
s.Let us say tha t a e e
ral standing to be a cquir ed s
moral status of the fetu ­ def ect will allow full mo �; vauve view will apply to late ab ortions: they
se of mo ral d ci s ion iews attribu e fe elings . ... Sentience Conative
moral standing if, for the purpo
e
....Both of the established v
t a
hin g i it gra du ally ir m ::t� e a ssesse d on a ca se-by-c a se basi s and the is ro o t e d in a be ing's Pertaining to a being's will to perform
count ed for some fetuses, regardles s of th
t n s e
making, it must b e u ifo rm moral sta tus to all oug ht o be le gally permitte d only on appropriat: an act or volition .
for the purp ose of th e p res ent n t affe ctiv e and conative ...
own right. We may, e di si la ritie s ....
h er vag ue no ti o n mo r s mi
discussi on, mak e this rat
,
Sumner: A Third Way
2a CHAPTER 2 Fetuses

oit them fetal senti e nce. Of som e judgments , howe ver, we Our common moral consciousness lo cates
creatures have We thereby constrain ourselves not to expl
life.It is in virtue of b eing sentient that ruth le ssly for o ur own advanta ge . The
kind o f can be reasonably con fident. First-trimester fetuses contraception and infanticide m quite different moral
e r out of their
interests, which are compounded eith standing that they deserve
may be determine d by the
are clearly not ye t senti ent. Third-trimester fetuses cat�gories.This fact suggests implicit recognition of a
find agreeable
desires or out of the experiences they range and depth of their sensibility, and
in ordinary pr?�ably possess some degree of sentience, however �as,� asymmetry between choosing not to create a new
the protection mmtm�l. The threshold o f se ntience thus app ears
(or both). If morali ty has to do with circumstances this will vary with their
intelligence . l�fe m th: first place a nd cho osing to destro y a new
and promoti on of interest
s, it is a plausible conjecture e s equ als beings who to fa�l m the s econd trimester. More ancient and life once it has been created. The boundary between
beings capable We should therefore recogniz a . .
pnm1t1ve than cog nition, the ability to discriminate
that we owe moral duties to all those are as rational and sensitive as ours elve s. The criterion _
t�e t� o kinds of ac t is the threshold at which that
incl ude all sentient s1mp�e sensati ons o f pleasure a nd pain is pro bably hfe gams moral protection. Since gametes lack moral
of having interests. But this will also implies that if we encounter c r eatu re s who are _
es ... . ck affec t and the first form of co nsciousness to app ear in the standmg, co ntrace ption (however it is ca rri ed out)
creatu o utte rly l
rational but nonsent ient-wh
r a
i ence a s admitting
lt m k s nse to th k of sent aff suchct ?ntogenetic order. Further, when sentience emerges me:ely prevents the crea tion of a new person.Since
desire-nothing we can do will adversely
a e se in e
de, su ch as the
o f deg rees . Wit hin a n y giv e n m o
- -- - - - '.t does not do so suddenly. The best we can hope for an i�fa nt has mo ral standing, infanticide (however it is
m y mor e or less c rea tures (in mor ally ( ts to locate a threshold stage or period in the second
perceptio n of pa in, o ne cr e atur e a be
anic computer earned out) destroys a new person. A second-trimester
th i a furt her s ense r e lev a n t wa y s ). W e I Orgartifi cially created computer
_
trimeste r. It is at presen t unclear just how far into
sensitive than anothe r. Bu t ere s
ld be e ntitl e d, for
An �hreshold of moral standing mtroduces this asymmetry
d (mo re r tion l) crea tures wou mad e from living neurons that �hat trimester this stage occurs. .. We are therefore mto the moral assessment of abortion.We may define
in which more develop e a a
e xpansion inst nce, to trea t the m seems to able to perform
be _
possess a higher degree of sentience.The
a
mev1tably confronted with a c lass of fetuses around an early ab_ortion as one performed some time during
ns up new as a peci es of orga nic rudimentary computations.
of consci ousness and of intelligence ope
s
'-- - - - - - the threshold sta ge whose sentience , and therefore the fir_ st tnme ster or early in the second, and a late
therefore new compute r. . . .
ways of experienc ing the world, and A criterio n of sent ience also requires ge
ntle usage whose moral status, is indeterminate. a�oruon as one performed sometime late in the second
ffec ted by th w rld. Mor e rational A criteri on based on sentience enabl e s us t o �nmester or during the third. An early abortion belongs
g e disabilities and
o
ways of bei e
or of the severely abnormal. Cog nitiv
n a
f find ing eit er fulfi llme nt ex�lain th e sta tus o f other putative thresholds. m the same moral category as contraception: it prevents
beings are capa ble of sensibility,
h
disorders may impair a person's ra nge
o
itie and state s f aff a irs t o which Ne1ther concept i on no r birth ma rks the transition the emerge�ce of a new being with mo ral standing.
frustration in activ s o
but they do not generally reduce that
p erson to the
ni tively a nd
le ss develop e d crea tures a re, both cog level of a nonsentient being. Even the gr ossly retarded
from a pres�ntient to a sentient being.A zygote has A l�te a b��uon belongs in the same moral ca tegory
_
s sense of a bro ader and no t one whtt more consciousness than the gametes as_ mfanuctde: tt termina tes the life of a new bei ng
affectively, blind. lt is in thi be capa bl of s me forms of
capable of a o r derange d will still
e o
deeper sensibility that a hi gher being is g and thus will still p ossess
out of which it is formed. Likewis e , alth o ugh a wuh moral standing.The threshold of sentience thus
er, fulle r, nd mor vari ed exis tenc e. The fact that enjoyment and sufferin right. This neonate has more oppo rtunity to employ its powers, it extends the morality of contraception forward to cover
ric h a e
(some) mor al s ta ndin g in their own
ts of d gre s (wh eth er of s ensitivity also has no greater capacity for sensation than a full­ early abortion and extends the morality o f infanticide
sentien c adm e t only when
standing diminishes to the vanishing poin
e i e
bl s u to emp loy it bot h as an ter� fet�s. ?f thresholds loca ted during gestation, b�c kward to cover late aboruon....The moral issues
or se nsib ility ) en s in the first
sentience is entirely lost or never gained
a e
par ison crit eri on of
inclusion crite rion and as a com
place.If all affect and responsivity are abse
nt, and if �u1ckening is the perception of fetal mo vement that raised by early abortion are precisely tho se raised by
king d m pre se nts us
moral standing. The a n im a l o
they cannot b e engendered, then (but on
ly then) are � pr��ably reflex and the refore prec onscious. Only c�ntr�ceptton. It 15 for early abortions that the liberal
ent bein gs
with a hierarchy of s entience . Nonsenti with a s ntie nt cre ature. This v1ab1hty has some rel e vance , though a t one remove. v�ew ts a� propriate. Since the fetus at this stage has no
nt b ei ngs the we no longer dea ling
e
have n o moral standing; among sentie verdict accords well with the c o ntem por a ry tren d A fetus is viable when _ to_ life: early abortio n (like contraception) cannot
nght
t ha n the less
more developed have greater standing toward defining death in terms of the perm anent loss
Quickening It is equ ipped t o v10lat� its r�ghts. But if it violate s no one's rights, early
lope d, the upp lim it b e ing occupied by t he ents are in
Usually considered the point in survive in the outside abortion (ltke contraception) is a private act. ... If a
v
de of cerebral functioning. Although such pati
e er
an b eing. Although
pregn ancy wh en a woman feels her
paradigm of norm a l adu lt hum r blood circu s and lat world. A being that '"'.oman elects an early abortion, then, whate ver the
one obvious sense still alive (thei fetus move.
a e
crite rion of mor al standing, it is also is awar e of, and ca n circums�ances and whate ve r her reasons , she does
sentience is the ense they are
the r leva n of r ati onality. The is oxygenate d), in the morally relevant s respond to, its own nothmg 1mmoral.2
p ossible to expl ain e ce
them neither
is one of ndin g int e llige nce. now beyond our reach, for we can cause Viability inne r state s is able The mora l issues raised by late abortion are similar
evolutionary order
asce
rests, it is good nor ill. . .. The point at which a fetus is able to
Since rationality expands a creature's inte to c om m u n i c a t e to th ose raised by infanticide. It is for late abortions
--
rmines
o ral standing The adoption of sennence as a criterion dete hve outside the uterine environment.
a re liable indicator of the degree of m of mor al st ndi g. Sinc e - its nee ds to o thers. that (a weakened form of) the conservattve view is
less rational the location of a threshold
a n
which that creature possesses.Creatures se ntience admits of degrees, we c an in p rinc iple This ability is of no �ppropriate.�ince the fet us a t this stage has a right to
n hum an bei gs d not alt o gether lack standing, fully enti ent In utero us e in utero but hfe, late abomon (ltke infanticide) may violate its rights.
th a n o
construct a co ntinuum ranging from
s
do l ck full stan ding ... . s nt ent Pertaining to the environment inside m ay aid surviv a l But if_n may v10late the fe tus' rights, then late abortion
but they a
creatures at one extreme to completely
non e i
can t hus allo w for the �he uterus or womb. a n extrauterine
A crite rio n of sent i e nce
in the order creatures at the other....
- -- ____..) in (hke mfanticide) is a public act.There is, however, a
. .
gradual emergence of moral standing There is no dou bt tha t a n ewbo rn
mfant is -- - -�---- e nvironment. A fetus
�ora11_Y_ s1gmficant difference between late abortion and
in why n m ral i s sues a rise ..., is th erefore probably
of nature. It can expl stcal pain, '.nfanuc1de.A fetus is parasitic upon a unique individual
o o
sentient- that n fe els hunger, thirst, phy
a btrauterine
ate obj e ct s ,
(directly) in our deali ngs with inanim the pleasure of sucking, and oth e r agr e eable a n d Perta·inmg to the en� ronment outside s e n ti e n t by t h e m a 1:1�nner _in which a newborn infant is not. That
e.lt ca n also
plants, and the simpler forms of animal lif
the uterus or womb. conventional stage of parasmc relauon will justify late abortion more liberall
There is lso no dou bt that
nters with disagreeable sensations.
a
-- ______ ., viability (around the
functio n as a moral guideline in our encou is pre s ntie nt. ... than i�fanticide. Since we have already explored th:
ture s w e a zygote , and also an embryo,
e
novel life forms on o ther planets. If the crea The info rm a u o n we now pos sess d o es not end of the second trimester). Viability ca n therefore mo rality of abort i on for those case s in which the
sts a d r pabl e o f enjoyment and serve as a (rough) indicator of moral standi ng. fetus has moral standi ng, the gene ral appro ach to
meet have inte re n a e ca
ena bl e us to date with ac
curacy the emergence of
, we mus t gran t h m s om e moral standing.
suffering t e
Little: Abortion, Intimacy, and the Duty to Gestate 31
30 CHAPTER 2 Fetuses

late abortions is clear enough.Unlike the simple and A liberal view of early abortion m effect extends
a woman's deadline for deciding whether to have a
li=id=il Abortion, Intimacy, and the Duty to Gestate
uniform treatment of early abortion, only a case-by­ Margaret Olivia Little I Ethical Theory and Moral Practice 1999; 2: 295-312.
case analysis will here suffice. We should expect a child ....A deadline in the second trimester allows a
serious threat to the woman's life or health (physical woman enough time to discover that she is pregnant
or mental) to justify abortion, especially if that threat and to decide whether to continue the pregnancy.If Introduction: The Method Question
becomes apparent only late in pregnancy.We should she chooses not to continue it, her decision violates It is often said that the public debate on abortion, in outlawed. Second, neither takes as pivotal the fact
also expect a risk of serious fetal deformity to justify neither her duties nor any other being's rights. addition to being politically intractable, is too crude: that gestation occurs inside of someone's body....On
abortion, again especially if that risk becomes apparent From the point of view of the fetus, the upshot of any reasoning proffered (as opposed to the more mainstream views, if abortion is the type of action that
(as it usually does) only late in pregnancy. On the other this treatment of early abortion is that its life is for a usual fist-pounding) fails to capture the subtleties violates a right to life, and the fetus turns out to be the
hand, it should not be necessary to justify abortion period merely probationary; only when it has passed and ambivalences that suffuse the issue.... sort of creature that has such a right, then abortion
on the ground that pregnancy was not consented to, the threshold will that life be accorded protecuon.... I want to argue that this is no accident. The topics must be prohibited whatever hardships unwanted
since a woman will have ample opportunity to seek an Settling on sentience as a criterion of moral that abortion touches on, including motherhood and pregnancies involve for women; for we simply don't
abortion before the threshold stage. If a woman freely standing thus leads us to a view of the moral status intimacy, and again vulnerability and responsibility, take hardships as justification for murder....
elects to continue a pregnancy past that stage, she will of the fetus, and of the morality of abortion, which are amongst those least explored by mainstream In wondering whether abortion is murder the
thereafter need a serious reason to end it. satisfies the constraints set out above. It is gradual, theory. Most profoundly of all, abortion is about a issue is not just a matter of deciding whether or when
A differential view of abortion is therefore liberal since it locates a threshold stage rather than a kind of interconnection that our inherited theories the fetus is a person: it is a matter of determining the
concerning early abortion and conservative (in an point and allows moral standing to be acquired are particularly ill-suited to address.... A question contours of the right to life in the rather distinctive
extended sense) concerning late abortion. The status incrementally. It is differential, smce it locates of method thus shadows all discussions of abortion, circumstance of being gestated. It asks us how we
of the borderline cases in the middle weeks of the the threshold stage during gestation and thus whether acknowledged or not. Abortion asks us to should classify the action of "ending a pregnancy n
second trimester is simply indeterminate.We cannot distinguishes the moral status of newly conceived face the morality and politics of intertwinement and (that there is no neutral terminology here is precisely
say of them with certainty either that the fetus has and full-term fetuses. It is developmental, smce it enmeshment with a conceptual framework that is, the point). But we are encouraged by mainstream
a right to life or that it does not.Therefore we also grounds the acquisition of moral standing in one to say the least, poorly suited to the task. A tradition pro-life and pro-choice views to miss this question.
cannot say either that a liberal approach to these aspect of the normal development of the fetus.And that imagines persons as physically separate might be It turns out, that is, that the two features I isolated
abortions is suitable or that a conservative treatment it 1s moderate, smce it distinguishes the moral status expected not to do well when analyzing situations in above as shared ground of these mainstream
of them is required.What we can say is that, from of early and late abortions, and applies each of the which persons aren't as it imagines them. And this positions are deeply related. In not highlighting
the moral point of view, the earlier an abortion is established views to that range of cases for which It is, in fact, precisely what we find. Let me give as an the fact that gestation happens inside of bodies, we
performed the better.. . is appropriate.... example of this distortion the way in which the legal can end up thinking of fetuses, not just as persons,
debate has proceeded in the United States. but as persons atomistically situated, as physically
In the United States, it is fair to say that the individuated and separate-as though the bundle
Study Questions
---------------�-
landscape of mainstream public discussion on of specified rights at issue for the fetus is the same
abortion is dominated by two positions: a pro-life bundle we commonly face walking down the street
position that likens abortion to murder, and the in everyday life ....
l. What is the main problem that Sumner finds with both 3. In Sumner's view, when is a late-stage abortion
justified? pro-choice position as it is developed in the famous Of course, even if we decide that abortion isn't
the liberal and the conservative views of abortion? Roe v.Wade decision, which stresses a fundamental best construed as a violation of the right to life, the
2. On Sumner's account, what is the basis of moral right to privacy. These two positions are obviously law might still have reasons for wanting to prohibit it,
standing? in deep conflict with one another, and the continued and ethics a basis for protesting it.Indeed, to my way
intractable public debate gives witness to just how of thinking, the most interesting sources of concern
deep the divide goes. It is all the more striking, about abortion would still remain: these are concerns
then, to see that there are two key features they grounded in the idea that the woman who aborts is
Notes
For a generahzed notion of moral standing freed from all share in common. not so much violating the fetus' right to life as she
J. The adoption of this working definition of moral standing
should not be construed as a concession that rights are connection with rights, see L. Wayne Sumner, Abortion and First, both agree that the legal permissibility of is reneging on positive responsibilities she has towards
the appropriate category for dealing with the moral issues Moral Theory. Princeton, NJ: Princeton University Press, 1981, abortion turns on the question of fetal personhood. the fetus, either as a matter of general decency or in
posed by abortion. But since both of the established views Secuon 23.
That is, while they disagree vehemently about whether virtue of some special maternal relationship. The
employ the rhetoric of rights, there 1s some pomt to show ing 2 Unle ss there are circumstances (such as extreme underpopulation)
in which contraception would also be immoral a fetus qualifies as a person, they agree on what would really interesting questions about abortion, I think,
how that rhetoric is equally available to a moderate view.
follow if it did. Persons have a fundamental right to are questions about whether or when one has a duty
life, after all; and abortion would be the type of action to continue gestating when one finds oneself pregnant.
that violates such a right: if the fetus were a person, But, while this question is more interesting, it must
both sides find it obvious that abortion should be also be handled with care. If we are to assess the
Little: Abortion, Intimacy, and the Duty to Gestate 33
32 CHAPTER 2 Fetuses

This isn't, though, the end of the story.In ethics, if life that comes one's way (a virtue that is perfectly
legal right to abort, but whether and when it is moral
positive responsibility to gestate, we must assess it in we notice relationships at all, we tend to focus only on consistent with using birth control-one may try
to exercise that right. In my experience, mainstream
full appreciation of the fact that gestation is an intimacy. questions about what morally flows from or governs one's best to avoid guests and yet think it a virtue
discussions of this question are disturbingly off base.
Let me explore the difference this appreciation might relationships once they have been entered.I But to welcome them if they show up on your doorstep).
make to our views about the moral and legal status of To be asked to gestate is to be asked to share one's very
there is another layer to the ethics of relationships: More importantly, the biological substrate of being
body-and likely, by the end, one's heart.To gestate
abortion, beginning with the legal question. considerations surrounding whether one ought to connected to the child in one's belly grounds a special
is to be engaged in an intimacy of deep proportions.
enter-or be open to entering-a relationship, and claim of openness to further relationship....
The ethical issues salient to questions of inttmate
again, when it is permissible to exit. There are some What I now want to suggest is that this framework
Intimacy without Consent actions, though, have been almost universally ignored
onal philosophy.... very general virtues at the level of entering: it is a of relationship ethics helps to make sense of what
What harm is visited, what burden imposed, when in traditi sign of good character to be appropriately open to can otherwise seem to be rather puzzling features
What we need in thinking about abortion is a
the state forces someone to continue gestating? new relationships (a mild requirement, to be sure, of certain intuitions about the moral responsibilities
ach that does justice to the ethics of
To be pregn ant is to be inhabited. It is to be moral appro given that one can be open but decline because, as of gestation. More specifically, it can help to capture
occupied. It is to be in a state of physical intimacy intim
acy; what we have is a moral approach that
the word. it were, one's dance card is full) ... . If biology per and to make sense of the fact that intuitions about
of a particularly thorough-going nature. The fetus rarely uses se carries any relevance, I want to argue, it is at this the moral responsibility to gestate are, at one and
ver medic al Let me explore the issue by focusing on what is
intrudes on the body massively; whate level. The biological connections definitive of what the same time, varied, urgently felt, and curiously
strongest-if usually tacit-concerns about
risks one faces or avoids, the brute fact remains that one of the we might call thin parenthood count as a substrate underdetermined. For if responsibilities to share one's
ity of abortion. If truth be known, many
the fetus shifts and alters the very physical boundaries the moral of parenthood thickly understood-of parenthood as body turn on the specifics of the lived relationship
about the permissibility of abortion are
of the woman's self. To mandate continuation of reservations personal relationship. They provide children with a at hand, the lived relationship accompanying
an idea of what mothers owe their children;
gestation is, quite simply, to force continuation of grounded in moral claim that the person so related be open toward gestation is itself varied, urgently felt, and curiously
people, moral questions about abortion are, if
such occupation. To mandate that the woman remain for many developing a deeper relationship.... My point is underdetermined. Let me explain.
a species of the ethics of parenthood.If this is
pregnant is to mandate that she remain in a state of you like, only that, if biology is morally salient, it is salient as Just as women differ in their conceptions of the
we need an adequate ethics of parenthood:
physical intertwinement against her consent.... The true, then a claim toward a further relationship-our intuitions fetus' status, they differ in how they conceptualize
to understand what makes someone a paren t
complaint is with the idea of forcing a woman to be we need on the subject are often intuitions about the moral the relationship they are in with that fetus. Some
y normative sense, and what the contours
in a state of physical intimacy with and occupation in a thickl legitimacy of yearning for personal relationship with women feel from the start that they are in a special
nsibility really are. I want to argue that
by this unwitting entity . For, unwitting or not, it still of the respo those of biological connection, and sense of betrayal personal relationship with the growing fetus.They
can have different layers-biological, legal,
intertwines and intrudes on her body; and whatever parenthood if the reasons for declining are too casual or callous. conceptualize themselves as a mother, thickly
nal relationship-and that, crucially,
the state's beneficent motives for prote cting the but also perso There are, then, moral claims that flow from construed, in relationship with an entity that is "their
moral responsibilities attach to different
interests of the fetus, it matters that the method used different extant personal relationships and also moral claims child," whatever the further metaphysical details.
me give the general framework and then
for that protection involves forcing others to have layers. Let about being open to entering such relationships.... The structure of their psyche has already shifted, the
another entity live inside them .... show how it applies to the special case of gestation.
In its paradigmatic form, parenthood is a lived, This matters especially for the responsibilities-and fetus' welfare is inextricably bound with their own,
Mandating gestation against a woman's consent the abnegations-of parenthood. The anatomy of and it is unthinkable not to gestate-or it would,
relationship, not just a legal status, one that,
is itself a harm-a liberty harm .... However joyful personal parental abandonment is a complicated thing . It is at the least, take enormously weighty reasons to
involves a restructuring of psyches, a lived
pregnancy under consent may be-yearned for or in the ideal, a form of abandonment callously to refuse openness refuse. For others, the sense of relationship grows,
interconnection, and a history of shared
tolerated as a means to an end you endorse-gestation emotional to a child with whom one stands in biological as most personal relationships do, slowly: the
mandated against consent is itself a harm .... experiences. It is because of that lived intertwinement,
ts' motivation to sacrifice is so often connection, and it is a form of abandonment pregnancy begins as mere biological relationship
However joyful, meaningful, or just plain fun sex indeed, that paren blithely to refuse a sacrifice that would, against a but, as the day-to-day preoccupations of decisions
(why parenthood thickly lived is one of
under consent may be, sex against consent is itself a immediate lived relationship, be reasonably expected: but they involving the welfare of another (of mediating what
of genui nely virtuous, as opposed to
harm-even if there are no bruises or broken ribs.So, the few sites are not the same abandonment .... Gestation, I've she eats, how she sleeps) accumulate, and she finds
ent, action). But it is also because of
too, forced gestation against consent is a liberty harm, merely contin claimed, is an intimacy of the first order-it is even herself in personal relationship.For other women,
inement that the child has legitimate
however meaningful pregnancy under consent­ the lived intertw more intimate than donating an organ, for it involves the relationship is never one of motherhood thickly
s of enormous sacrifice, and why failure
even if there are no further harms such as medical expectation an intertwinement and on-going occupation. This construed: she is simply in biological relationship with
such assistance would, absent unusual
complications or social cost. The extent to which to provide means, on the above approach, that a responsibility a germinating human organism. For still others, the
es, be so problematic-it becomes a
this harm is absent in the mainstream literature is circumstanc to gestate does not arise merely from the fact of being sense of relationship shifts throughout pregnancy: a
relationship itself....
startling.I don't mean that it is mentioned and too betrayal of the in biological relationship with the fetus: pregnant conception of motherhood is tried on, then dispatched,
quickly disregarded; I mean it is rarely on the table.... Some paren tal respo nsibi lities , I want to
suggest, are functtons, of the lived and personal women do not have an automatic, role-based moral or arrives fully formed out of the blue.
relationship that so often accompany them, and �uty to gestate.2 But this doesn't mean that pregnancy For purposes of the woman's integrity, her
ts not a moral moment.For one thing, just as there conception is determinative. Her own sense of what
Morality and Intimate Duties that responsibilities to share one's very body, like
paradigmatic of those are mild virtues of openness to relationship, it is a type of reasons she would need to end a pregnancy
The matter of lived urgency to so many women, of responsibilities of the heart, are general virtue to be welcoming of germinating human is in large part a function of how she understands
course, is not so much whether they should have a that are relationship-based.
34 CHAPTER 2 Fetuses CHAPTER 2 End of Chapter Resources 31

the particular relationship she is experiencing in normative status). But the claim here is not that the Koppelman, A., forced Labor: A Thirteenth Amendment Thomson, J.J., A Defense of Abortion. Philosophy and Public
gestating (including its other relatum). For a woman woman's assessment of the pregnancy determines Defense of Abortion. Northwestern University Law Review Affairs 1 (1971).
the fetus' status.... The point here is a specific and 84 (1990), pp. 480-535. West, R., Gender and Jurisprudence, in Patricia Smith (ed.),
one who conceives of herself as already intertwined
MacKinnon, C., Reflections on Sex Equality Under Law. Yale Feminist Jurisprudence. Oxford: Oxford University Press,
as mother, and the fetus as her child, it would contained one. Not everything about one's moral
Law journal, 100 (1991), p. 1314. 1993, pp. 493-530.
take reasons approaching life and death to decline duties to fetuses (or again to newborns) trades on McDonagh, E., Breaking the Abortion Deadlock: From Choice to Wreen, M., Abortion and Pregnancy Due to Rape Philosophia
gestating; for one who conceives of herself as in a personal relationship. There are all sorts of duties that Consent. Oxford: Oxford University Press, 1996. 21 (1992), pp. 201-20.
biological relationship with burgeoning life, lesser have nothing to do with those particulars. But some Rothman, B.K., Redefining Abortion, in Recreating
reasons will suffice. responsibilities, including, I've urged, responsibilities Motherhood: Ideology and Technology in a Patriarchal
From an external or objective perspective, of gestation, do. The only claim about the woman's Society. New York: Norton, 1989, pp. 106--24.
though, it is very difficult to get a foothold on what conception is that it's the only thing we have, other
expectations and claims we might press on behalf of than mere biology, to tell whether there is a personal
the fetus-to determine, as it were, which woman's relationship extant and what its textures are like. We
conception is correct. And this, crucially, is not just might say that her conception is largely determinative
because it's hard to garner evidence, but because of what the relationship is, and that her moral Chapter Study Questions
there isn't much to determine what the relationship responsibilities follow its suit, or-better, I think­
is .... With gestation, it is hard to determine what we may simply say that there is too little going on for 1. The authors of the articles in this chapter agree What is the main difference (if any) between
reasonable expectations we might press on behalf of there to be a fact of the matter of what responsibilities that some abortions are permissible. To what them on this question?
are objectively owed.... extent do they agree? To what extend do they
the fetus; and this is because there simply is little 3. Little raises various objections to the mainstream
disagree?
to the relationship, as a relationship, other than the One of the most common reasons women seek treatment of the morality of abortion. Do the
biological substrate and the woman's experience and abortions is that they do not have room in their 2. Marquis and Sumner seem to defend theories analyses provided by Sumner and Marquis avoid
life just then to be a mother, but they know if they according to which infanticide is permissrble. these objections? Explain your answer.
conception of it.
Now mentioning the woman's conception of the continue the pregnancy they will not be able to give
pregnancy and fetus makes many people nervous. up the child. What has seemed paradoxical (and Critical Analysis
It can sound as though we are ceding far too much indeed ethically confused) to many strikes me as a
power to her subjective experience (as do some crude perfectly sensible, and often wise, appreciation of Consider the following from the article by Marquis: is sufficient to explain why it is wrong to kill human
conventionalists, according to whom the woman's the different moral contours involved with entering, beings after the time of birth is a reason that also
"The claim that the primary wrong-making feature
view of the fetus determines its metaphysical and existing in, and exiting relationships.... applies to fetuses, if follows that abortion is prima
of a killing is the loss to the victim of the value
of ifs future has obvious consequences for the facie seriously morally wrong.•
ethics of abortion. The future of a standard fetus
Study Questions includes a set of experiences, projects, activities,
Outline Marquis' argument in your own words,
paying particular attention to the premises that he
and such which are identical with the futures of relies on to support his main conclusion. Choose one
I. What are Little's two objections to the mainstream 3. Little argues that the biological connection between a adult human beings and are identical with the of the premises for evaluation. Try to think of at least
treatment of the morality of abortion? fetus and its mother is the basis of some duties to the futures of young children. Since the reason that one objection to this premise.
2. Little relies heavily on the idea that pregnancy fetus, but not the duty to gestate. What is the basis
involves a kind of intimacy and intertwinement. of the duty to gestate? What role does a woman's
How does she define these terms? integrity play in the grounding of this duty? Case Study
In the 1988 R. v. Morgentaler case, the Supreme Court engineering at a university in a large urban centre. She
of Canada ruled that law then governing abortion was in is 34 weeks pregnant. She is not married and has only
Notes violation of the Charter of Rights and Frudoms. As a result, a very small income and no partner with which to raise
Canada currently has no law specifically governing the child, She is visiting Canada only for the purpose of
l. Barbara Katz Rothman briefly discusses the crucial difference 2. This is not meant to settle whether she has a perfect duty of
between entering and exiting relationships in her an icle beneficence to gestate, only to urge that she does not have a abortion, except those laws that govern surgical her studies. However, if she is forced to return to her
Redefining Abortion (1989). special duty grounded m the role of motherhood. procedures more generally. This makes it possible for home country she fears being ostracized and being
a person to obtain an abortion during the late stages of punished for being pregnant out of wedlock. The fetus
pr�gnancy (especially in large urban centres). Although is well beyond the point of viability and it is only a few
References this turns out to be quite rare, it does happen in Canada. weeks away from being considered full term. She does
Feinberg, J .. Abortion, in Freedom and Fulfillment: Kamm, FM., Creation and Abortion: A Study in Moral and Legal Consider the following case. not claim to have been raped or to have had sexual
Philosophical Essays. Princeton: Princeton University Philosophy. New York: Oxford University Press, 1992. A young woman has newly arrived in Canada relations that suggest the baby is a product of incest.
Press, 1992, pp. 37-75. from a foreign country for the purpose of studying She does, however, appear confused and distressed
CHAPTER 2 Fetuses
r answer to the first
2. Which factors matter to you
t performs abortion� She
when she enters a clinic tha question?
� to medical ?roce ures,
appears competent to consen 3. If the woman in question wa
s ca�rying �:��=
mg an abortion.
and the clinic permits her hav with a serious birth def ect , wo ul you c . .
for a woman to obtain of the abortion in
Do you think it permissible your mind about the morality
stage of pregnancy?
1. an abortion at this late question?

Further Reading a: Twenty yea�s �t��


Procreation and Child Rearing
Richer K. Ab ort ion in Canad
ortion. Oxford: University R v Morgentaler. Library of
Parliament, 2
Boonin D. A d efence of ab
.parLgc.ca/Content/

W
Press; 2003. A�ailable from: htt p://www
Vitae (�995) [Internet]. rb0822-e.pdf. Date
LOP/researchpublications/p
hat sort of child is it good to desire or to seek to produce? A vast majority of
Po e John Paul II, Evangelium
ww.vat1c an.va/ ed ocs / Accessed: 5 June 2012.
�vailable from: http://w
people believe that one ought to want a healthy and happy child, and that one
te Accessed: 5 June inist lens, Dialogue
ENG0141/_1NDEX.HTM. Da . S. Abortion through a fem
ought to take the steps most likely to facilitate this outcome. These obligations
SherwIn,
1991 30:327-42.
are most palpable during pregnancy, infancy and early childhood. The prevailing wisdom
2012.
. Available fro��ttp/�
R v Morgentaler [Internet]
is that anyone considering assuming responsibility for a child is encouraged to educate
/doc/1988/1 can"
. �ww.canlii.org/en/ca/scc
her- or himself about parenting. Women are urged to eat correctly, to avoid smoking and
essed: 5 Jun 2012.
e
0/1988canlii90.pdf. Date Acc
consuming alcohol during pregnancy and to breastfeed their baby during the first year of
life and to thereafter offer only the most nutritious food and the highest quality stimulation.
Men are prodded to be active and engaged parents and to be especially supportive of new
and nursing mothers and emotionally vulnerable infants and toddlers. There is in general a
strong demand that parents do what they can to enhance their child's mental and physical
health and welfare.
The conventional means of satisfying this demand for the most part involve maximizing
the potential of an existing fetus or infant. However, for those relying on in vitro fertilization
(!VF), technology offers a larger menu of options for producing healthy, happy children. !VF
is a process in which an embryo that is fertilized in a laboratory is subsequently implanted
in a womb. Before an embryo is transferred it is possible to employ a technique known as
pre-implantation genetic diagnosis or PGD. This procedure makes it possible to determine
the genetic makeup of an embryo and in particular to test for chromosomal abnormalities
or genetic mutations known to be associated with certain diseases. This knowledge can
then be used to reject embryos that have increased propensity for certain diseases (e.g.,
sickle-cell anemia and cystic fibrosis) and to select embryos that have traits that are posi­
tively correlated with health and well-being. The embryos that are considered desirable
are then implanted.
PGD is legal in Canada. It is currently employed in some fertility clinics, though it
is difficult to determine how frequently it is used and for what purposes. There are few
norms governing it beyond those covering medical procedures in general. The Assisted
Human Reproduction Act, which regulates PGD, among other things, forbids it only for
the purpose of selecting for or against a particular sex for non-medical reasons. This
means that in Canada many genetic conditions might be used as the basis for selecting
an embryo. PGD might therefore be used to produce a happy, healthy and socially well­
adjusted child.
But ought individuals to avail themselves of all possible means of producing the
child with the rosiest life prospects? The first two papers in this chapter deal with this
question. In "Procreative Beneficence: Why We Should Select the Best Children," Julian

,.

,
Savulescu: Procreative Beneficence 39
CHAPTER 3 Procreation and Child Rearing

Sa vu les cu argues that for those usin g !VF it is


obligatory to u s e PGD to sel� ct the best M•)U Procreative Beneficence: Why We Should
sump­
c hild pos si ble..}avule s cu's case
for th is claim begins with the uncontr�verstal a� Select the Best Children
s a life better, all thi ngs c o nst �ered,
tion th at well-being matters. That something make disea se
Julian Savulescu I Bioethics 2001; 15: 413-26.
ote it. There are a num ber of both
gives u s a strong but defea s ible reason to prom
ns (e.g., impul_se contro'.) that _make
conditions (e.g., asth ma) and non-disease co nditio Introduction
to help us a void producing chlldr en
a difference to the quality of one's life. PGD is able Imagine you are having in vitro fertilization (\VF) and genes in some cases even if thi s maintains or increases
produc in g ch ildren with g reater impulse
with asthma and may in the future a ssist us in you produce four embryos....One is to be implanted. social inequality.
omote welfare by helpin g us to p
roduce
control.PGD i s therefore capable of helping us pr is stron g reas on t o You are told that there is a genetic tes t for predispos­ �y "should" in "should choose," I mean " have good
r lives. Hence there
children who, give n t he evidence, will live bette bry that one ition to scoring well on IQ tests (call this intelligence). reason to." l will understand morality to require us to
c t the em
one has employed IVF and to sele
o
employ PGD i n cases in wh ich If an embryo has gene subtypes (alleles) A, B there is a do what we have most reason to do. In the absence of
expects to have the best prospects. greater than 50 per cent chance it will score more than s ome other rea son for action, a person who has good
b olic Harm," Elizabeth Gedge urges
In her article '"Healthy' Human Embryos and Sym 140 if given an ordinary education and upbri nging. If reason to have the best c hild is morally required to
Sh e in particular c oncerned wit� what
s
us to consider the negativ e implications of PGD.
i
s are it has subtypes C, D there is a much lower ch ance it have the best child ... .
is known as t he expressiv ist critiq
ue, according to which PGD and related technolog1� .
abled are not w rth 1 1 g. will score over 140.Would you test the four embryos
of the di s
_ � � �g
v
problematic because they send a message that the lives by dist g for these gene subtypes and use this information in Definitions
backing. Sh e start in uishi n
She is keen to pr ov ide this argument with a firm
s

d s ymbolic; and she thi n k that the use selecting which embryo to implant? ... A disease gene is a gene which cau ses a genetic
between two kinds of harm s: consequentialist, an
s

f arms for the disabled, t�ough h:r focus is o� Many people believe that research into the genetic disorder (e.g., cystic fibrosis) or predisposes to the
of PGD is capable of producing b oth kinds o h
contribution to intelligence should not be performed,
pro�uce _ s!mbohc h�rm m two ��y s. developme nt of di sease (e.g., the genetic cont ribu­
symbolic harm. She think s that the use of PGD can_ and that if genetic tests which predict intelligence, or
with d1sab1ht1es. PGD 1s deh umamzmg tion to cancer or dementia). A non-disease gene i s a
by dehum anizing, and by subordinati ng those a range of intelligence, are e ver developed, they shou ld
embryos that are healthy and those that gene which causes or predisposes to some physical or
be cause it invo lves drawing distinction s between al, a no t be emplo ye d in psychological state of the person wh ich is not itself a
sabled fall shor t of t h e genetic i_de __ _
are u nhealth y, and thi s in turn impl ie s th at th e di tes th di abl ed reprodu c tive deci- disease state, e.g., height, intelligence , character (not
respect.PGD subo rdina e s Genetic tests which predict
view th at is inconsistent with proper co ncer n and tal instit utio s, intelligence sion-maki ng. I will in the subnormal range).
medical and governme _ n
because, as a social practice that is supported by
n
ng and Intelligence is the result of both argue that we have a
to the abled, pu tting the hts � he
it s ends a message that the disabled are inferior in favou r of banmng
genetic and non -genetic factors, mo ral obligatio n t o Selection
G dge i not, h weve r,
entitlements of the di sabled i n j eopardy. making it a trait that is difficult to
e s o
otect reproductiv e free dom. She h op
es select for. Any such test that is test for genetic contri- It is currently possible to selec t from a range of pos­
or limiting the use of PGD since she is keen to pr
limiting its negative effec t s on the mo s t developed for this trait is likely to be bution to non-disease sible children we could ha ve. This is most frequently
th at it is possible to respect this freed om wh ile prone to error. states suc h as in telli- done by employi ng fetal selection t hrough prenatal
v uln erable.
tends to be equivalent to the study gence and to use this testing an d termination of pregnancy. Selection of
In the literature on bioeth ics, reprodu ctive ethics final information in reproductive decision-making.... embryos is now possible by employing in vitro fer­
of th e ethical issues arising du
ring pregnancy and the early stag es of life. I n the
a K kla argue�,for a recon s ider ati on tilization and pre-implantation genetic diagnosis
paper of this chapter, «Measuring Mothering," �ebecc �
r
_
ught instead to refer to the ethic s of Procreative Beneficence: The (PGD). There are currently
of this fo cus.Sh e argues that reproductive eth tc s o orms no genetic tests available for Pre-implantation
ncerned in particular with the n
creating a nd caring for new generations." She is co _ Moral Obligation To Have The Best non-dis ease s tates exc ept genetic diagnosis
ure moth ering by reference to a se� of
governing moth ering.There is a tendency to meas Children A technique allowing for the
erence to extended narratives. It
is common to t��nk sex. However, if such tests
signal m omen ts rat her than by r ef g I will argue for a principle which I call Procreative
genetic evaluation of embryos
become available in the that have been created using
socially enfor � norms wh�n g ivin
ce
that a good mother is one who behaves according to Kukl a t i ks that Beneficence: fu ture, bo th PGD and pre­ in vitro fertilization. A biopsy
early stages of hfe. n
birth to her child and when feeding her child in the
h

that, or impo rtantly, they reinforce privi �ege a nd natal testing could be used to is performed on the embryo
many of these norms are dubious a n d m e "Couples (or single reproducers) should select the
and the cells are screened for
that encourage good mothermg over select offspring on the basis
distract u s from developing policies and programs child, of the possible children they could have, who
of non-disease genes....
various genetic mutations or
t he long term. is expected to have the best life, or at least as good chromosomal abnormalities.
a life as the others, based on the relevant, available Knowledge gained from this is
information." AnArgument typically used to determine which
embryos to transfer to the uterus.
I will argue that Pro creative Beneficence implies For Procreative
cou ples should employ genetic tests for non-disease Beneficence
traits in selecting which child to bring into existence Consider the Simple Case ofSelectionfor Disease Genes.
and that we should allow selection for non-di s ease A couple is having !VF in an attempt to have a child. It
Savulescu: Procreative Beneficence 41
CHAPTER 3 Procreation and Child Rearing

possible futur e options on the basis of the informa­ inflict a higher risk of having a child with a disability
that we experience pleasure.According to desire-ful­
produces two embryos. A battery of tests for common tion provided (fa iling to respect the child's "right to on a couple (who do not want a child with a disability)
filment the ories, what matters is the degree to which
diseases is performed. Embryo A has no abnormal­ an open future"). to promote social equality.
our desires are satisfied. According to obj ective list
ities on the tests performed. Embryo B has no abnor­ ,There are a number of responses.Firstly, in some Consider a hypothetical rubella epidemic. A
malities on th e te sts p erformed exce pt its genetic theories, certain activities are good for people, such cases, it is possible to deny that the har ms will be rubella epidemic hits an isolated population. Embryos
as achieving worthwhil e things with your life, hav­
profile r eveals it has a predisposition to dev elopmg significant.Parents come to love the child whom they produced prior to the epi-
ing dignity, having children and raising them, gain­ Rubella
asthma.Which embryo should be implanted? have (even a child with a serious disability).Moreover, demic are not at an ele vated An
Embr yo B has nothing to be said in its favour over ing knowledge of the world, developing one's talents, infection also known as
some have argued that counselling can reduce exces­ risk of any abnormality but German measles. If a pregnant
appr eciating b eautiful things, and so on.
A and something against it.Embryo A should (on pain sive e xpe ctations.3 thos e produced during the woman is infected, this can
On any of these theories, some non-disease genes
of irrationality) be implanted .... Se condly, we can acce pt some risk of a child epidemic are at an increased result in her fetus being
Why shouldn't we sele ct the embryo with a pr e­ will affect the likelihood that we will lead the best life.
e xperi encing some stat e of re duced w e ll-being in risk of de afness and blind- infected with congenital rubella
Imagine there is a gene which contributes significantly
disposition to asthma? What is relevant about asthma cases of selection. One variant of the harm to child ne ss.Doctors should encour- syndrome, which can produce
is that it reduces quality of life.Attacks cause severe to a violent, explosive, uncontrollable temper, and that a range of health problems,
objection is: "If you select embryo A, it might still get age women to use embryos including mental retardation and
breathlessness and in extreme cases, death. Steroids state causes people significant suffering.Violent out­
asthma, or worse , cancer, or have a much worse life which they h ave produced congenital heart disease.
may b e require d to tre at it. These a re among the bursts le ad a person to come in conflict with the law
than B, and you would be responsible." Yet selection pr ior to the epidemic in pref-
most dangerous drugs wh ich exist if taken long term. and fall out of important social relations.The loss of
is immun e to this objection .... e rence to ones produce d during the e pidemic. The
Asthma can be lifelong and require lifelong drug treat­ independence, dignity and important social relations
Imagine you select Embryo A and it develops re ason is that it is bad that blind and deaf children
ment. Ultimately it can leave the sufferer wheelchair are bad on any of the three accounts .... cancer (or severe asthma) in later life. You have not ar e born when sighted and hearing children could
Does being intelligent mean one is more likely
bound with chrome obstructive airways disease.The harmed A unless A's life is not worth living (hardly have been born in their place .
morally relevant property of "asthma" is that it is a stateto have a better life? At a folk intuitive level, it seems plausible) b ecause A would not have exist ed if you This does not ne cessarily imply that the lives of
which reduces the well-being a person experiences. plausible that intelligence would promote well-being
had acted otherwise. A is not made worse off than A those who now live with disability are less deserv­
on any plausible account of well-being. On a hedon­
would otherwise have been, since without the sele c­ ing of respect and are less valuable. To attempt to
istic account, the capacity to imagine alternativ e
An Objection to Procreative pleasures and remember the salient feature s of past
tion, A would not have existed. Thus we can accept prevent accidents which cause paraplegia is not to
the possibility of a bad outcome, but not the prob­ say that paraplegics are less deserving of respect. It
Benefi.cence in the Simple Case experiences is important in choosing the b est life.On
, intelligence is important to ability of a very bad outcome. (Clearly, Procre ative is important to disting uish betwe en disability and
The following obj ection to Procre ative B enefic ence is a desire-fulfilment theory Beneficence demands that we not choose a child with persons with disability._Selection reduces the former,
will best satisfy one's ends.
common. "If you choose Embryo A (without a predis­ choosing means which a low predisposition to asthma but who is likely to but is silent on the value of the latter. The re are bet­
nt, intelligence would b e
position to asthma), you could be discarding someone On an obJ ective list accou have a high predisposition to cancer.) ... ter ways to make statements about the equality of
no to gainin g know ledge of the world, and
like Mozart or an Olympic swimmer. So there is important
pe ople with disability (e.g., we could direct savings
developing rich social relatio ns. Newson has reviewed
good reason to select A." Inequality from selection against embryos/fetuses with genetic
lating intelligence to qual­
It is true that by choosing A, you could be dis­ the empirical literature r e
One objection to Procreative B en e ficence is that it abnormaliti es to improving well-b eing of existing
the mp1ric al literature is
carding a person like Mozart. But it is equally true ity of life. Her synthesis of
e
instru ntal value for
m will maintain or increase in equality. For example, people with disabilities).
that if you choose B, you could be discarding some­ that "intelligence has a high
e
a large amount of complexity it is often argued that selection for sex, intelligence, The se arguments extend to selection for non-dis­
one like Mozart without asthma. A and B are equally persons in giving them favourable physical or psychological traits, etc. all ease genes. !t is not dise ase which is important but its
their everyday lives. and that
likely (on the information available) to b e someone wllh which to approach contribute to inequality in society, and this is a r e a­ impact on well-being.In so far as a non-disease gene
which can lead to the provi­
like Mozart (and B is more likely to have asthma).... it equips them with a tool
s10n of many oth er p ersonal and social goods."2 ... son not to attempt to select the best. such as a gene for intelligence impacts on a person's
In the case of selection against disease gene s, we ll-being, parents have a reason to select for it, even
Moving From Disease Genes similar claims are made. For example, one version if inequality results.
To Non�disease Genes: Objections to the Principle of of the Disability Discrimination Claim maintains that Jhis claim can have counterintuitive implica­
What is the "Best Life?" Procreative Benefi.cence Applied to prenatal testing for disabilities such as Down syn­ tions. Imagine in a country women are se verely
drome results in discrimination against thos e with discriminated against.They are abandoned as chil­
It is not asthma (or dise as e) which is important, Non-Disease Genes those disabilities both by: dren, refused paid employment and serve as slaves
but its impact on a life in ways that matter which is Harm to the Child to men. Procre ative Beneficence implies that couples
important. Non-disease genes may prevent us from • the statement it makes about the worth of such
should test for sex, and should choose male s as they
leading the best ltfe. One common objection to genetic selection for non­ lives; and
diseas e traits is that it re sults in harm to the child. • the reduction in the numbers of people with are expected to have be tter lives in this society, even
By "best life," I will understand the life with the if t his reinforces the discrimination against women.
most well-being. There are various theories of well­ There are various versions of this obj ection, which this condition.
being: hedonistic, desire-fulfilment, objective list include the harm which arises from e xcessive and There ar e several responses. Firstly, it is unlikely
overbeanng parental e xpectations, using the child as Even if the Disability Discrimination Claim were s election on a scale that cont ributes to ine quality
theories.I According to hedonistic theories, what mat­ ff true,it would be a drastic step in favour of equality to
ters is the quality of our experiences, for e xampl e , a means, and not tre ating It as an end, and closing o would promote we ll-b eing. Imagine that 50 per cent
CHAPTER 3 Procreation and Child Rearing Gedge: "Healthy' Human Embryos and Symbolic Harm

of the population choose to select boys.This would to guide those choices. Procreauve Beneficence 1s a
valid principle, albeit one which must be balanced
Study Questions
result in three boys to every one girl. The life of a male
in such a society would be intolerable. against others.
Secondly, it 1s social institutional reform, not inter­ The implication of this is that those with dis­ 1. What is the central value on which Savulescu's argu­ 3. Do you agree that we should seek to produce the
ference in reproduction, which should be promoted. abilities should be allowed to select a child with dis­ ment relies? child with the very best life rather than the child
What is wrong in such a society is the treatment of ability, if they have a good reason. J3ut the best option 2. Why is Savulescu unconvinced that PGD is harmful that is free from conditions that significantly impact
women, which should be addressed separately to 1s that we correct discrimination in other ways, by to a child? well-being?
reproductive decision-making. Reproduction should correcting discriminatory social institutions. In this
not become an instrument of social change, at least way, we can achieve both equality and a population
not mediated or motivated at a social level. ... whose members are living the best lives possible.
Notes
D Parfit. 1984. Rtasons and Persons. Appendix I, pp.493-502. 3. J Robenson. Preconception Sex Selection. American Journal of
Limits on Procreative Beneficence: Conclusions Oxford. Clarendon Press: Part IV;J Griffin. 1986. Wdl-Being. Bioethics 1:1 (Winter 2001).
Personal Concern for Equality or With respect to non-disease genes, we should provide: Oxford. Clarendon Press.
2 A Newson. The value of intelligence and its implications for
Self-Interest • information (through PGD and prenatal testing);
genetic research. Fifth World Congress of Bioethics, Imperial
Consider the following cases. David and Dianne are College, London, 21-4 September 2000.
• free choice of which child to have; and
dwarves. They wish to use !VF and PGD to select a • non-coercive advice as to which child will be
child with dwarfism because their house is set up
for dwarves.Sam and Susie live a society where dis­
expected to enter life with the best opportunity
of having the best life.
Mf4•M "Healthy" Human Embryos and Symbolic Harm
crimination against women is prevalent. They wish Elizabeth Gedge I In: Nisker J, Baylis F, Karpin I, McLeod C, Mykitiuk R. The Healthy Embryo: Social,
to have a girl to reduce this discrimination.These Selection for non-disease genes which signifi­ Biomedical, Legal and Philosophical Perspectives. Cambridge University Press, 2010: 233-50.
choices would not harm the child produced if selec­ ca;tly impact on well-being is morally required
tion is employed.Yet they conflict with the Principle (Procreative Beneficence)."Morally required" implies Introduction
of Procreative Beneficence. moral persuasion but not coercion is justified. The term genohype is used by some writers (Caulfield Expressivism claims that prenatal diagnosis (PND)
We have here an irresolvable conflict of principles: If, in the end, couples wish to select a child who et al. 2001) to refer to the excessive preoccupation and pre-implantation genetic diagnosis (PGD) send a
will have a lower chance of having the best !ife, they with genetic medicine, the exaggerated claims made
• personal commitment to equality, personal message that devalues and poses a threat to persons
should be free to make such a choice.That should not
interests and Procreative Autonomy; and on its behalf, and various associated dangers.... with disabilities. The claim has two logically distinct
prevent doctors from attempting to persuade them to

j
• Procreative Beneficence. A primary application of genetic medicine is components.... The threat of unwanted interven­
have the best child they can. In some cases, persua­ in the reproductive sphere, where prenatal or pre­ tion, increased discrimination or reduced service
Just as there are no sion will not be justified. Jf self-interest or concern implantation testing for embryo "health," reproduct­
tive Autonomy alleged (Saxton 2000; Wates 2005) to be implicit in
-le to direct one's procreative simple answers to what to promote equality motivate a choice to select less ive counselling and the offer of selective termination the lower status assigned by the practice to persons
, b reference to one's should be done (from than the best, then there may be no overall reason to ___ _ _ ·--------.. are increasingly seen with disabilities points to a potential consequential­
· c:osen reproductive goals. the perspective of ethics) attempt to dissuade a couple. »ut in cases in which
- ---- Prenatal testing as routine aspects ist harm ....Insofar as expressivism also objects to
when respect for per- couples do not want to use or obtain available infor­ Genetic testing performed during of good reproduct­ the very proclamation implicit in PND and PGD, it is
sonal autonomy conflicts with other principles such mation about genes which will affect well-being, pregnancy to detect chromosomal ive care. Many per­ making ...a claim about non-consequentialist, rep­
as beneficence or distributivejustice, so too there are and their desires are based on irrational fears (e.g., and other genetic abnormalities. This
usually involves testing fetal tissue or sons with disabilities resentational or symbolic harm ... that attaches to
no simple answers to conflict between Procreative about interfenng with nature or playing God), then
-----. amniotic fluid. It is routine in Canada claim that testing for the meaning of acts or practices rather than to their
Autonomy and Procreative Beneficence. doctors should try and simila
Liberal democracies r coun tries. "healthy" embryos effects. The symbolic harm alleged to attach to PND
.for the purposes of public policy, there should be to persuade them to Sociefes such as Canada's in wh ch -- -- ----- and the conceptual- and PGD is that it devalues persons with disabilities
a presumption in favour of liberty in liberal democra­ access and use such the population has some measure of
ization implicit within it not only stigmatize disabled by seeking to identify "healthy" embryos.1 We can
cies. So, ultimately, we should allow couples to make information in their control over the government and in persons as deviant, but send a message that their lives
which individual rights and freedoms unpack this claim as follows: PND and PGD devalue
their own decisions about which child to have. Yet this reproductive deci-
are paramount and legally protected. are not wonh living or that they are not welcome. . .. persons with disabilities (1) by depicting them in
does not imply that there are no normative principles sion-making. The target of the objection is the evaluative attitude a way that is inconsistent with their proper moral
expressed by practices that seek to prevent the birth of status, and/or (2) by unjustly positioning them as
persons with disabilities.This view has been labelled subordinate.
expressivism.. . I consider whether it can be given a
sound rendering.

II'
44 CHAPTER 3 Procreation and Child Rearing Gedge: 'Healthy" Human Embryos and Symbolic Harm 46

under the logic of domination, these descriptors act remedy.The disabled Other is incorporated by being reproductive choices, and Nancy Press (2000) directs
Devaluation and Proper as implicit norms, in each case situating the contrast­ defined in terms of her lack of ability and is simul­ attention to what she calls the "official view" of the
Moral Status ing property or party as an inferior Other.Collections taneously stereotyped because what is important is purpose of PND: that it aims to reassure or psycho­
What is it to be represented consistently with our of such inferiorized descriptors cluster around cer­ that she and other members of her group are not like logically prepare women and to allow for in utero
proper moral status? Jean Harvey (1999, pp. 105-9) tain groups (women, non-human animals, persons the non-disabled.... Finally, instrumentalism allows or early therapeutic intervention.As accounts of the
offers a useful distinction between the proper moral of colour, slaves, the environment) and , with the us to deny disabled Others the status of independent meaning of PND or PGD, expressivism must address
status of members of the moral community and our aid of five identity-constructing devices, define and centres of desires and needs.... Situating "genohype" these claims....
de facto status. Our proper moral status is the status solidify the self-understandings of both the dominant in a framework of dualistic logic shows how the mes­ PND and PGD . . . are socially established and
we carry as human persons, and it should elicit "rec- and the inferiorized Other.The conceptual devices, sage of PGD can be inferiorizing, and how it can read­ orchestrated practices, organized within the institu­
ognition respect;" our de which serve to deny continuity between the polar­ ily find uptake in a disableist cultural environment. tions of scientific funding and research, population
De facto facto status reflects the ized groups and to obscure any distinctiveness within For rather than offering a conceptual model within and prenatal health, and the provision of medical
A Latin term meaning "in fact.• The recognition we actually the inferiorized, are backgrounding, hyperseparauon, which persons are represented as Kantian "ends in care....PND and PGD have an underlying ideology­
author is concerned with the actual receive and the degree of incorporation, instrumentalism and stereotyping... themselves," "genohype" thoroughly constructs the
moral status of the disabled as a set of rules, principles and value judgments framed
empowerment that we, It is instructive to consider how the non­ - - identities of persons in a particular normative understanding of health....
opposed to the status they ought to
be accorded. as moral agents, enjoy. disabled/disabled distinction can be unpacked using Kantian "ends in themselves" with disabilities by What do PND and PGD, as practices, amount to? .. .
Although our proper Plumwood's model. .. . "Genohype" ... constructs The idea found in the ethical
their problematic Where the structures, procedures and outcomes
philosophy of Immanuel Kant
moral status (deriving from our worth as human disability as deviance from a supposed norm of health (1724-1804), according to which each relation to the norm exhibit values and purposes at odds with those that
beings and our equal membership in the moral com­ and humanness .... Under "genohype," disability is human being has a special status by of genetic health, are alleged, practice meaning can be questioned.
munity) cannot be increased or diminished, our de inferiorized to non-disability. Once a genetic para­ virtueofpossessing the capacityfor which can be con- Is the purpose of PND or PGD the enhancement of
facto status clearly can.... One's public persona can digm of disability is accepted, descriptors of infer­ rational choice. Proper respect of this sidered a symbolic reproductive choice, the reassurance of women and
be degraded by embedded bias directed (consciously iority cluster around the notion of disability. So, value involves treating each human as harm.
an end and never as a means only. couples, or the expansion of therapeutic possibilities
or not) towards oneself or the group with which one is physicality ...becomes a defining feature of persons as the official story suggests? ... The problems of
identified.Stereotypes of female irrationality, timidity with disabilities and carries with it the oppositional false positives and negatives, and the impossibility
or excessive emotionality persist, as do stereotypes of feature ...primitivity ( because the physical is con­ Expressivist Claims of predicting severity of outcome in the case of many
gay promiscuity.The disabled bear, and are perceived trasted to the cultural).Defined materially, disability Placing "genohype" in the dualistic logic of domina­ conditions tested for suggest that the aims of mater­
to be, "burdens." How we, or the group with which we is then conceived as hostile to mind, to freedom and tion not only supports the expressivist claim that PND nal reassurance and therapeutic preparation are ques­
are identified, are represented both reflects and shapes to civilization....Inferiorizing strategies follow read­ and PGD devalue persons with disabilities through the tionable (Carroll et al., 1997). Reassurance is tainted
our standing in the moral and cultural imaginary.... ily. Backgrounding is ... evident in the discourse message they send about "unhealthy" embryos but by diagnostic uncertainty and the anxiety associated
To understand the conceptual dynamics of iden­ of "accommodation," which assumes the priority of also strengthens the plausibility of the claim that such with the outcome of tests, and choice is problematic
tity construction and their relation to devaluation, the non-disabled and discounts the ubiquity of vul­ practices can, indeed, send a message. Expressivism because of the normalization of testing and its con­
we need an account of dualistic logic.As Taylor and nerability and depend- has been given two different articulations: the indi­ struction as "doing what's best for the baby...."
Mykitiuk (2001) argue, genetic discourse has come to ency....The paradigm of Discourse of vidual act version, and the social practice version.2 From an analysis of her research on California's
dominate the language of health and to divide us into the non disabled, adult, "accommodation" According to the individual act version, deciding to maternal serum alpha fetoprotein screening policy,
"healthy" and "unhealthy" according to our relation independent, rational The political and legal language terminate a pregnancy or finding a particular embryo Nancy Press (2000) argues that the official goals of
emp,oyed in attempting to make
to a norm of genetic health. This form of relational citizen is at the core of provisions for the disabled in "unhealthy" and unacceptable because of disability enhanced choice and therapy rest on a normative sub­
categorization follows a familiar pattern of dualistic hypothetical models of a sooety like ours that caters sends a message that persons with disabilities are text that emphasizes benefit to families or individuals
and hierarchical thinking, thoroughly expounded political negotiation, as primarily to the needs and inferior, unworthy of life or unwelcome. According to rather than society; that assumes the joint good of
by Val Plumwood (1993). The logic of negation, ... though we were not all l desires of t�e non-disabled. the social practice version, which is the focus in what mother and fetus; and that is broadly "for life" (p.
she argues, sets up a conceptual world in which the thoroughly dependent follows, it is the practice - the funding, development 222). Yet a close examination of the practice, argues
positive defines and inferiorizes the negative . . .. as children and destined most likely to be so again and expansion of tests for disability and the routiniza­ Press (2000), reveals instead controversial goals: the
Exploiting existing patterns of difference, the dualis­ in old age, if disease or accident does not hasten it. ability to terminate pregnancy for fetal disability ...
tion of such testing - that sends the message....
tic conceptual world solidifies difference into ...hier­ Hyperseparation essentializes and magnifies the dif­ and the concomitant cost savings to society. As she
archical and linked pairs of properties, ...attached ferences between disabled and non-disabled, locating points out, PND serves population health primarily
to asymmetrically positioned groups.Common to our the site of difference as the gene or body of the Other, The Meaning and the Message by precluding disabled persons from the popula­
received cultural understanding, for instance, are the thus obscuring any contmuity (for instance, common Alternative accounts of the meaning of PND and PGD tion.The subtext of the controversial goals ...is that
following contrasts: mind/body; reason/nature; rea­ difficulties with itinerant pain or weakness or with have been offered, and they are initially plausible. "not all life is worthwhile, and that the interests of
son/matter; human/non-human; male/female; civil­ obstacles in the physical or social world) and offering For instance, James Nelson (2000) suggests that the society may conflict with those of the fetus" (p.221).
ized/primitive. ... Although useful as distinctions, only a technological fix (the erasure of the Other) as the purpose of the practice is the expansion of women's Scepticism over the official story about the meaning
48 CHAPTER 3 Procreation and Child Rearing Gedge: "Healthy" Human Embryos and Symbolic Harm

of PND is further strengthened by ...the type of lan­ them of recourse available to others? If so, we could One might object that the analogy is faulty on If we judge a social practice to function so as to
g uage used in genetic counselling (e.g., the language argue that these practices influence negatively on the the grounds either that the objective of testing for violate the proper moral status of citizens, ...should
of "risk »), the routinization of maternal testing with­ de facto moral status of persons with disabilities.... disability is beneficent, or that (Scully 2005) it is such practices be prohibited? ... There are sound
out sufficient statistical justification, the asymmetries Two arguments may be presented to support the false that the disadvantages of disability could all be
I
reasons against such a draconian approach.... The
of epistemic and social authority between clients and
physicians ... and the background attitudes of all
view that the offer of PND and PGD does, indeed,
function in that way.... First, we might argue that
removed in some possible world. Does this perspec­
tive show that the analogy with sex and race fa ils?
message sent by a practice
,
. on ly one of.its moral ,ea-
1s
.----------
Draconian

the conceptual positioning within dualistic identity I think not. First, we have seen reason to question . Especially or unduly harsh.
participants towards disabilities (Press 2000). (For tures. The undes1rab'l'1 ny o f
instance, Press found that although only 15 per cent construction that devalues representationally at the whether the objective of the practice of testing for the message must be balanced against the import­
of women interviewed in her study said they would same time functions to rank persons with disabilities disability is beneficent. Nancy Press (2000) argues ance of respecting reproductive choice, reducing
terminate on a positive finding, the rate of termina- as inferior. As Plumwood's analysis (1993) of social persuasively that, in the case of PND, the "societ­ future suffering, and advancing medical knowledge.
tions after testing was 85 per cent (p. 221).) .. . categorization shows, difference is essentialized and ally accepted" beneficent goals cannot account Preferable is an approach that alters the devaluing
We might argue, then , that the subtext . . . of hierarchized in the logic of domination, which con­ adequately for the way the practice is structured, message while preserving these attendant goods, if
PND and PGD and the preoccupation with identify­ stitutes representational devaluation. Does this pro­ whereas the "controversial" goals of termination and possible....
ing "healthy embryos" is that of "serving" society by cess, and its concretization in the message of genetic cost containment can. But what about the claim that Because the "remedy" of prohibiting or even lim­
reducing the number of disabled in the population. testing, also legitimize discrimination against persons the practice reflects the truth that certain conditions iting genetic testing for disability in the context of
The supporting ideology, the rules, purposes, and val­ with disabilities? This question has been a matter of simply are incompatible with an acceptable qual­ reproduction is unhelpful in altering its message and
ues encompassed by these practices, are discernible hot debate, with opponents of expressivism ... point­ ity of life, and no amount of social readjustment would compromise reproductive autonomy and med­
in the linkage between testing and negative selection ing to the coincidence between enhanced support for would alter that fact? Does this claim not show that ical advances, other means of addressing the mes­
or termination, in the conditions tested for, and in the persons with disabilities and the rise of PND and PGD. the analogy with sex and race fails? To answer, we sage of testing must be sought. Here, attention to the
conceptual location of testing within the geneticized , For instance, argues Steinbock, "the rise of prenatal need only attend to the fa ct that testing is not lim­ discursive context is key.A corrective to the message
reductionist model of health and human identity.The screening has coincided with more progressive atti­ ited to fully predictable conditions known to be of genetic testing for disability will involve making
severe dissonance between the alleged ideology and tudes toward the inclusion of people with disabilities, incompatible with an acceptable quality of life, and adequate space for the dissenting discourses from
the structural and institutional manifestations of as evidenced in the United States by the passage of the that the genetic imaginary, by homogenization, fails disabilities theory and empowering persons who
PND and PGD cast doubt on alternative accounts, and Americans with Disabilities Act." However, according to acknowledge the relevant distinctions among dis­ speak from that position.Because discourses, even
increase the plausibility of the expressivist claim .... to Nancy Press, attitudes towards disability are ambiva­ abilities and lives lived with them .... when framed dualistically, are logically unstable,
lent and often shrouded in positive discourse. Under apertures for counter-discourses are available and
these conditions, legal protections and economic gains can be exploited. At the level of cultural imagery,
Devaluation and Subordination for persons with disabihues (though vitally important) Conclusion foregrounding narratives and performances of rich
Genetic testing for disability is supported by an are likely to be unstable. Furthermore, where social I have argued that the practice of testing for the lives lived in the absence of "goods" such as sight
authoritative medical discourse, whose pronounce­ attitudes are discriminatory, formal protections do "healthy" embryo is symbolically harmful insofar and hearing undermines the normative construction
ments may elicit widespread uptake (Sherwin 1992). little to ensure lives of security and respect. ... as it represents persons with disabilities as inferior of health.And at the political level, a good first step
Because physicians and geneticists have authority in The second line of argument supporting the claim and its message may also subordinate. Insofar as the towards broadening and democratizing reproductive
the domain of reproductive and population health, that PND and PGD deprive persons with disabilities message is authoritative and is taken up as such, it policy-making would be ...expanded public debate
the practice of genetic testing reflects a relevant body of rights and privileges is an argument by analogy. may rank persons with disabilities as inferior, legit­ on our aims in proceeding down the path of PND
of authoritative speakers and a body of hearers for Although . .. significant differences exist between imize discrimination against them and deprive them and PGD.
whom they are authoritative. And, further, a culture disability and race, class or gender, it is useful to con­ of rights and privileges....
of disableism supports a dominant discourse of par­ sider whether testing for sex or race, with an insti­
ental and social responsibility that militates against tutionalized connection to terminauon or negative
any countervailing desires or perspectives .... Can selection for a positive finding, would effect a reduc­
we then say that the socially endorsed practices of tion in the nghts and privileges of women or racial­ Study Questions
PND and PGD subordinate, that their routinization in ized groups (Scully 2005).This question is hardly
prenatal care, the massive share of healthcare and hypothetical; prenatal testing for sex is commonplace,
1. How does Gedge distinguish between consequen­ of the disabled and the conclusion that it sub­
research funding they receive, their institutionalized is accompanied by what some have called femicide,
tialist and symbolic harm? ordinates them?
affiliation with termination services, and their over­ and coexists with women's mferiorized status and
all embeddedness in the "genohype ideology" func­ diminished enjoyment of rights in contexts where 2. What is the difference between Gedge's conclu­ 3. What is Gedge's reason for not advocating a pro­
tion ...[to] rank persons with disabilities as inferior, such testing is widely practiced (Hoskins and Holmes sion that PGD undermines the proper moral status hibition on PGD?
legitimize discrimination against them and deprive 1984; Alexander 2001).
Kukla: Measuring Mothering 49
CHAPTER 3 Procreation and Child Rearing

and evaluate their own mothering in terms of them.


Notes These udefining moments" tend to come very early
Birth as a Maternal
1. Symbolic harm has intermittently been featured in ethical (1981), Michael Bayles (1984) and Christine Overall (1987) Achievement Test
debates over our reproductive practices. For instance, as early alerted us to the possibility of its inherent sexism. A sexist in the mothering narrative-indeed , several of them
as 1988, George Annas argued that by enforcing pregnancy practice, whatever its consequences, is prima facie open to come during pregnancy or even before conception. Labour and delivery typically take less than a day, some
contracts, we are p roclaiming that women (unequivocal holders moral disapproval, as they observed, in part because it pro­ Consider how the phrase reproductive ethics has women labour for as long as a few days. Mothering,
nounces persons inferior on the basis of sex. These objections
of legal and moral rights) are less important than the fetuses come to refer almost exclusively to ethical analyses of however, typically lasts for many decades . . . . Yet we
they are carrying. Furthermore, argued Annas (1986). when concern the ethical appropriateness of how certain acts and
practices represent members of the moral community and the discrete choices faced during pregnancy or even ear­ have elevated the symbolic importance of birth to the
women are required to forfeit their autonomy and submit to
intrusive procedures "for the sake of the fetus• and according messages they send about the moral status of those repre­ lier. Key topics in reproductive ethics include abortion, point where it appears to serve as a make-or-break test
10 the terms of their gestational contracts, sexual equality is sented, rather than their material or social consequences. pre-implantation genetic diagnosis, and fertility medi­ of a woman's mothering abilities . . . .
violated because such restrictions can apply only to women. 2. The distinction between the "individual" account and the
"social practice" version of expressivism is first made by James cine. This ought to strike us as strange. Reproduction According to our cultural my t ho s, ugood"
Sex selection as well as contract pregnancy was challenged is the process of creating new people and building mothers deliver vaginally without pain medication,
on non-consequentialist ethical grounds. as Tabitha Powledge Lindemann Nelson (2000).
families and communities. Reproductive ethics ought after advance planning and
to refer to the ethics of creating and caring for new appropriate prenatal edu­ Cultural mythos
References cation. Second-best moth­ Prevailing or common -sense
generations. This is a process that extends across the evaluative attitudes.
Alexander, W. (200 l ). fatal daughter syndrome. In Globaliz­ Press, N. (2000). Assessing the expressive character of life span . . . . Yet mainstream bioethicists consistently ers submit regretfully but
ing Feminist Bioethics, ed. R. Tong. Boulder, CO: Westview prenatal testing: the choices made or the choices made docilely to whatever medical
lose interest in mothers once the beginning of their
Press, pp. 1 79-97. available? In Prenatal Testing and Disability Rights, eds.
E. Parens and A. Asch. Washington, DC: Georgetown narrative is over. We give little or no bioethical atten­ interventions the doctors recommend. "Bad" moth­
Carroll, J.C., Reid, A., Woodward, C.A. , Permaul-Woods, tion to the ethics of mothering children after infancy. ers make "selfish" choices, such as giving birth at
J.A. , Domb, S. , Ryan, G. et al. (1 997). Ontario Mater­ University Press, pp.2 1 4-33.
nal Serum Screening Program: Practices, knowledge Saxton, M. (2000). Why members of the disability commun­ I claim that this reductive understanding of moth­ home, seeking out an epidural or a caesarean section,
and opinions of healthcare providers. Canadian Medical ity oppose prenatal diagnosis and selective abortion. In ering has had counterproductive effects upon health or attempting a vaginal birth after a previous c-sec­
Associationjournal, 1 56, 775-84. Prenatal Testing and Disability Rights, eds. E. Parens and care practice and policy, encouraging measures that tion . . . . In some hospitals,
Caulfield, T., Burgess, M.M., Williams-Jones, B., Baily, M.-A., A. Asch. Washington, DC: GeorgeLOwn University Press, penalize mothers who do not live up to cultural norms women that end up receiving r Epid ural - -
Chadwick, R. , Cho, M. et al. (200 1). Providing genetic pp. 1 47-64. during signal moments while failing to encourage caesarean sections resulting The injection of an analgesic into
testing through the private secLOr: a view from Canada. Scully, J. (2005). Admitting all variations? Postmodernism extended narratives of healthy mothering. 1
the epidural area of
in healt hy babies are rou­ during labour. This is done to the spine
Canadian journal of PoHcy Research, 2, 72-8 1 . and genetic normality. In Ethics of the Body: Postconven­
tional Challenges, eds. M. Shildrik and R. Mykitiuk. Cam­ One of the important tasks for feminist bioethics tinely given unsolicited lit­ provide pain relief.
Harvey, J . (1999). Civilized Oppression. Lanham, MD: Row­
bridge. MA: MIT Press, pp.49--68. is to turn the bioethical spotlight upon the fact that erature on grieving to help
man and Littlefield.
Hoskins, B. and Holmes, H.B. (1984). Technology and Sherwin, S. (1992). No Longer Patient: Feminist Ethics and reproduction not only happens in women's bod­ them through their feelings
prenatal femicide. In Test-Tube Women: What Future Health Care. Philadelphia, PA: Temple University Press. ies, but through women's ongoing, richly textured of failure and loss at not having successfully achieved
for Motherhood, eds. R. Arditti, R. Duelli-Klein, and S. Steinbock, B. (2000). Disability, prenatal testing, and select­ labour-labour that , after all, does not escape a a normative birth.3
Minden. London: Pandora Press, pp. 237-55. ive abortion. In Prenatal Testing and Disability Rights, eds. complicated relationship with medical institutions When women were first encouraged to draw up
Langton, R. (1993). Speech acts and unspeakable acts. Phil­ E. Parens and A. Asch. Washington, DC: Georgetown
and spaces a fter pregnancy ends . . . . Mothers bear birth plans in which they specified their preferences
osophy and Public Affairs, 22, 293-330. University Press, pp. 109-23.
Taylor, K. and Mykitiuk, R. (200 1). Genetics, normalcy and a disproportionate responsibility for managing their concerning pain medication, who would be allowed
Nelson, J. (2000). The meaning of the act: reflections on in their rooms during labour, and other basic aspects
the expressive force of reproductive decision making and disability. Canadianjournal of Policy Research, 2(3), 65-71. children's contact with professional health institu­
policies. In Prenatal Testing and Disability Rights, eds. E. Wates, M. (2005). Qualifying for the right to die-a dubious tions, maintaining their health at the domestic level of their care, the laudable idea was to help women
Parens and A. Asch. Washington, DC: Georgetown Uni­ privilege: assisted dying for the terminally ill. In Making (through feeding and hygiene practices), and train­ become at least partial agents of their own births,
versity Pres.s, pp. 1 96-2 1 3. Sense Of Health, Illness, and Disease, eds. I. Lange and ing them in safety and self-care. Correspondingly, rather than passively submitting to medical manage­
Plumwood, V. (1993). Feminism and the Mastery of Nature. Z. Norridge. Available at lnter-Disc1plinary. Net Http:// mothers are held disproportionately responsible for ment. However, over time, formulating a birth plan
London: Routledge. www.inter-disciplinary.net!mso/hid/hid4 l cc.htm. has moved from an empowering option to a social
their children's physical and mental health imper­
fections. 2 Just as bioethics misrepresents pregnancy duty. . . . Contemporary North American pregnant
and conception when it severs them from the rest of women are expected to plan out their births with
1Hid§4 Measuring Mothering
of Feminist Approaches to Bioethics 2008; 1: 67-90.
mothering, likewise accounts of the ethics of family the elaborate precision and care of a traditional bride
Rebecca Kukla I International Journal relationships miss a pressing dimension of mothering planning her wedding d ay, and they are expected to
if they fail to bring the tools of medical ethics to bear. do it early. . . . We can push the analogy between
Yet as a society we have a tendency to measure In the following, I explore two examples of signal birth planning and wedding planning farther: as
. . . Aristotle (1941) said that a man's happiness could
motherhood, not in extended narratives, but by a set moments that we interpret as displays and tests o f women are called upon to plan and design their
be measured only once he was dead; happiness and
of signal moments that we interpret as emblematic women's maternal adequacy; I then turn t o the larger births, they are invited to think of birth, not primar­
unhappiness reside in his life narrative only taken as
tests and summations of women's mothering abil­ cultural and ethical impact of measuring mothering ily as the first day of the rest of their children's lives,
a whole. Similarly, good mothering can be constituted
ities . . . . Mothers often internalize these measures in these ways. . . . but as their "special day," during which their tenure
only through an entire parenting narrative. . . .
CHAPTER 3 Procreation and Child Rearing Kukla: Measuring Mothering ,1

as mothers will be symbolically foreshadowed and caesarean, home births) are extremely safe for mother health of babies but an image of proper motherhood, productive message that the more breast milk babies
put on display, just as weddings are often framed as and baby alike. Britney surely takes fewer chances combined with the idea that birth should function as receive, the better.... According to the La Leche
the bride's special day and as the symbolic moment at with her baby by scheduling a c-secoon than does a symbolic spectacle of such motherhood.... League a single bottle of formula can trigger life­
which the perfection (or imperfection) of the marriage a mother who chooses a preschool that is a car ride threatening allergies, and
is performed as a spectacle. rather than a walk away from her home.4 any contact with artificial La Leche League
In fact, whether we cast caesarean sections or You Are What Your Child Eats nipples ( bottles or paci­ An organization that started in 1he
Such elaborate birth plans set up completely US in 1956 with the intention of
unrealistic expectations concerning how much con­ vaginal births as the risky, selfish option varies in Providing high-quality early nutrition to children and fiers) can cause nipple promoting and educating mothers
trol one can possibly have over the labouring process, accordance with context, not in accordance with eating well during pregnancy are undeniably important confusion, wherein the and families about the benefits of
thereby setting women up for feelings of failure, lack actual risks. Some women who have resisted med­ components of good mothering.Children's nutritional baby is no longer will­ breast-feeding.
of confidence, disappointment, and maternal inad­ ically recommended caesarean sections have been status depends on eating habits that are established ing or able to latch onto
equacy when things do not go according to plan, served with court orders, or in the case of Melissa over time. However, our culture is replete with images a breast. In fact, although it is true that a baby who
even when mother and baby end up healthy.... Rowland in Salt Lake City in 2004, with homicide of feeding moments that purportedly corrupt both chil­ is regularly fed from a bottle may reject the breast
Furthermore, although the entire phenomenon of the charges, while women who wish to attempt vaginal dren and mothers in some permanent way. or lose the skill of latching onto it, there is no evi­
"birth plan" is pervaded by the rhetoric of choice and birth after a previous caesarean section are increas­ The logic of the single corrupting bite shows dence for nipple confusion resulting from the occa­
autonomy, all women know that good mothers make ingly faced with draconian hospttal restrictions vividly in a recent article by Jodi Kantor in the New sional use of artificial nipples (cf. Fisher and Inch
some choices but not others. For instance, indicating (Schneider 2005; Grady 2004) and the same charges York Times entitled "Memo to Nanny: No Juice Boxes." 1996 and Neifert, Lawrence and Seacat 1995). A
that one wants pain medication at the earliest med­ of selfishness and risk-taking that their peers who Kantor writes, ... "The current nutritional wisdom 1992 study fo und no difference in breast-feeding
ically possible moment is not a socially acceptable seek elective caesarean sections face. The standard says that what children eat may set their tastes in outcomes between newborn infants who were exclu­
choice, even though it is a choice available on the justification for preventing women from attempting place permanently. In this view, a hot dog is never just sively breast-fed and those who received one bottle
form.... vaginal births after a caesarean is based on the risk a single tube of meat." Here the seemingly single hot daily (Cronenwett, Stukel and Kearney 1992). The
In popular culture, the distaste for mothers who of catastrophic outcomes due to uterine rupture. Not dog is pictured as extending beyond itself, determin­ pervasive fear of instant nipple confusion among new
do not behave properly during their births is strong only is the risk of uterine rupture tiny, but-ironic­ ing and encapsulating a lifetime of poor eating hab­ mothers, cultivated by the medical establishment, the
and explicit, as is the implication that this bad behav­ ally-this risk turns out to be roughly equivalent to its rather than remaining singular.By allowing a hot World Health Organization (WHO) and the United
iour reflects upon the entirety of their mothering.... the risk of uterine rupture during primary vaginal dog to slip into her child in a moment of weakness, Nations Children's Fund (UNICEF), among others, is
Mothers who choose elective caesareans for non-med­ delivery (Smith et al. 2002). Meanwhile, repeat a mother can pervert the child's tastes and eating itself indicative of the power of the logic of the single
ical reasons are vilified by the media and in online caesareans are no safer than primary caesareans; practices forever, thereby undoing months or years corrupting moment....7
discussions. In an article entitled "Too Posh to Push indeed, quite the opposite. In other words, whether of devotion to ... planning and preparing balanced The idea that each feeding moment presents a
Moms Set Bad Example for Society," the Vancouver Sun a scheduled caesarean or an attempted vaginal birth meals for her child out of fresh ingredients.... pivotal choice between risk and maternal responsibil­
editorializes, "Pity poor Sean Preston Spears Federline is the socially sanctioned, "properly maternal" choice Birth is an idiosyncratic event, and I have argued ity extends backwards into pregnancy. What to Expect
... His mom couldn't even be bothered to suffer a depends on whether or not the mother had a previous that mothers are measured by their performance dur­ When You're Expecting warns, "Every bite counts:
little pain for a lot of gain on the day of his celebrated caesarean or not. But the fact of a previous caesar­ ing this event. The logic of feeding is slightly differ­ Before you close your mouth on a forkful of food,
birth.Yes, giving birth the old-fashioned way hurts. ean in no way reverses the relative risk of these two ent: one must feed one's child over and over again, consider, 'Is this the best bite I can give my baby?' If it
Welcome to motherhood" (Fralic 2005). Here, Britney options. Therefore, here our social attitudes toward and there is no discrete moment at which one can will benefit your baby, chew away.If it'll only benefit
Spears' elective c-section is taken as reflecting directly proper maternal choice are cut free of any basis in prove one's proper maternality through feeding. On your sweet tooth or appease your appetite, put your
upon her entire relationship to motherhood, whereas objective relative risks.s the other hand, at any moment a mother may prove fork down." (Murkoff, Eisenberg and Hathaway 2002)
proper maternity is associated with self-sacrifice and But in any case, the real risks and their sizes do herself an improper mother through an act of feeding. This passage ... demands that mothers discipline
a willingness to bear pain.... not seem to be of interest to the lay critics of mothers' Hence this is a test that one can never pass but is their eating with literally every bite of food, avoiding
Part of what interests me about comments like birth choices, who appear quite content with hand­ always at risk of failing.... the corrupting, selfish bite that is not baby-directed.
this is the complete vagueness concerning what waving references to gains and harms. Especially Indeed, one can fail the feeding test very early on. Here, eating simply because one is hungry ("to
sorts of gains and harms are at stake.What exactly because these critiques are not responsive to any Many parenting guides claim outright that allowing appease your appetite") is akin to maternal betrayal.
would Britney gain by attempting a vaginal birth, and specific, sizable risks, it is hard not to conclude that her baby one single suck on an artificial nipple may The risks and benefits that arise from mothers'
exactly how are mothers who elect c-sections putting the main normative standards at pl ay are ideological, destroy a mother's chances for a successful breast­ ongoing lifestyle, economic security, and access to
their babies "in harm's way"? ... This is a complex not medical: Our cultural insistence that women make feeding relationship f orever (and ...that a baby who high-quality foods far outweigh the risks and benefits
scientific question....What we do know is that, in "proper" birth choices and maintain control over their is not breast-fed is at high risk for failure to bond that attach to any single forkful or suck. Our focus
comparison with a host of other mundane activities, birth narratives is not about minimizing real risks; with its mother, low IQ, and multiple behavioural on the importance of feeding moments rather than
and in comparison to all previous moments in his­ rather, it supports our desire to measure mothering in and health problems).6 North American breast­ on long-term eating patterns betrays an ideological
tory, al! of the standard options for birth in developed terms of women's choices and self-discipline exercised feeding promotional materials consistently empha­ picture of normative maternal performance, rather
nations (caesarean sections, vaginal births after during signal moments. What is at stake is not the size exclusive breast-feeding, as opposed to the more than a reasonable concern with children's well-being.

lf
CHAPTER 3 Procreat on and Chi d Rearing Kukla: Measuring Mothering 53

financially secure white women....8 Among other poor decision will turn out to have tragic conse­ social stresses; and a safe, competent,junk-food-free
The Effects of Measuring Mothering determining factors, poor and minority women quences, ... single events rarely play a large role public school system for all children.
in Moments are less likely to have jobs that provide enough in determining how a child will turn out, or how If we take seriously the idea that reproduction is
I have described two maternal activities ...that ... maternity leave to establish breast-feeding or pri­ healthy and successful a mothermg narrauve will be. typically a decades-long social and material labour
serve as cultural tests during which women's mater­ vate spaces in which to nurse.They are more likely My suggestion is that we need to view mothering as of love, and never merely a biological event involving
nal bona fides are measured .... The rhetoric sur­ to be single parents and to work long hours.9 a work in progress until the very end.When it comes eggs, sperm,and wombs; then these are all reproduct­
rounding these moments suggests, on the one hand, to health promotion and policy, we should shift our ive rights, and the bioethical consideration of their
~------. that they will determine Thus to the extent that we take "proper" mater- attention away from mothers' performances at key contours and limits is reproductive ethics. Hence the
id•• the success of the future nal performance during key moments as a measure moments, and onto providing families with the sys­ reorientation of attention that I have been urging
phrase meaning good faith. I mothering narrative ... of mothering as a whole, we will re-inscribe social temauc support that would enable women to engage would dramatically change the scope and methods
and on the other hand, privilege. We will read a deficient maternal character in ongoing narratives of good mothering.Such sup­ of reproductive ethics. In the first instance, repro­
that they reveal the truth about a woman's fitness to into the bodies and actions of underprivileged and port would include food and job security; decent ducuve ethics would no longer concern particular
mother.... socially marginalized women, whereas privileged maternity leave; full access to family planning; a medical choices made before conception and during
Our cultural images of proper maternal behaviour women with socially normative home and work lives cleaner environment; universal access to decent pregnancy.Its primary subject matter would be lar­
during these tests are not politically neutral.Rather, a will tend to serve as our models of proper mater­ education and health care; workplaces and labour ger questions of social, economic, and environmental
woman's ability to perform "properly" with respect to nal character. Yet it is likely that women pass these laws that are structured around the assumption that justice, and inevitably-rather than just as an after­
prenatal care,birth, and feeding are marked by socio­ mothering tests less by dint of their inherently mater­ many workers will have substantial parental com­ thought-gender equity....As feminists, we must
economic status and ethnic identity.Consider: ... nal character and their responsible commitment to mitments, including commitments to breast-feeding insist that bioethicists take mothers to be whole,
their children than because they have the right kind and to fathering; accessible mterventions for women socially situated people with entire life narratives,
(1) A woman's chances of having an unmedicated of education, financial resources, health insurance struggling with addiction, mental illness, or other typically including several decades of mothering.
vaginal birth that goes according to a predeter­ plans, family structure, and jobs.
mined birth plan ... depend heavily upon her Our focus on how mothers perform at signal
own health, her access to high quality, continuous moments is part of a larger cultural sensibility: in Study Questions
health care with a provider who is familiar with North America and Britain, at least, public ethical dis­
her preferences, her ability to articulate her wishes course focuses heavily on personal responsibility and
in a way that health professionals will under­ l. Describe the two signal moments in a woman's life 3. Kukla contends that "we need to view mothering as
willpower as it is displayed (or fails to be displayed) at that Kukla discusses.
stand, ...her ability to hire an advocate such as a work in progress until the very end." What does
discrete choice-points, rather than on the structural this involve? Why is this important?
a d1iula or midwife, and her level of support from 2. What does Kukla believe is the proper scope of
conditions that enable or undermine people's ability
family members who reproductive ethics?
to make good choices over the long term. It is dif­
can speak for her during ficult to turn public attention to the environmental,
coach providing emotional the birth. The ability to economic, and social conditions that can make vari­
1er support to a woman during insist that a birth plan be
and the initial stages of ous choices and behav10urs difficult or easy; instead Notes
re, but who usually possesses respected by the hospital we tend to employ a conceptual repertoire- ... of
staff normally requires a 1. As an anonymous rereree rightly pointed out, I do not make 12 November 2007) for a large clearmghouse of literature
lical expertise. character, will-power, choice, and responsibility­ any serious attempt to define good or healthy mothering in designed to aid emotional recovery after cesarean section.
high degree of education, that inherently isolates individuals as ethical agents this paper. Surely women can be better or worse mothers 4 I could not possibly document or compare all the possible
confidence, and perceived social authority. Every and occludes such contextual determinants. However, my interest here is in gaining critical distance from risks of routine driving and of being born by scheduled caes­
one of these factors varies by socioeconomic pos­ This individualist logic encourages policies and (what I see as) one problematic, hegemomc way or measuring arean section. But for purposes of illustration, consider that
ition. Women who manage to have a "natural" mothering, rather than with forging and defending a specific according to the National Center for Statistics, the 2003 rate
initiatives that focus on influencing the choices that alternallve picture of the ethics of mothering. Mothering is or automobile accident-related fatahties in the United States
birth may feel that they are somehow communing mothers make at particular moments, rather than on serious moral work, and hence we do need to consider what was 8.34/1000 population, whereas the rate of perinatal death
with their mythical pre-industrial sisters, but in creating structural conditions that foster extended it takes to mother well; hopefully, however, we can transcend associated with scheduled caesarean sections in the United
fact, they normally draw heavily upon their social the idea that mothering can be measured in any uniform way. States is 1.3/1000 population (Landon et al. 2004).
narrauves of healthy mothering....
privilege and their immediate access to state-of­ 2. I elaborate and defend the claim that mothers play such a 5 The argument of this paragraph, differently worded, appeared
As a culture, then, we privilege early, discrete crucial role in the health care system in Kukla (2006). previously in Lyerly et al. (2007).
the-art technological interventions in enacting moments of choice as the measures of mothers, as 3. This was the practice at Ottawa Civic Hospital, where I gave 6. Cf., e.g., La Leche (1997) and Tamaro (1998), as well as the
their birth narratives. opposed to ongoing patterns and developing rela­ birth to my perfectly healthy son by caesarean section. I do standard lactauon nursing textbook, Lawrence 1994, which
not know how many hospitals do this. however it is easy recommends giving new mothers this advice
(2) Poor women have less access to high-quality, tionships-as tf we can bond in a moment, destroy
to find pamphlets designed for this purpose online. See for 7. Cf.. e.g .. American Academy of Family Physicians 2000.
diverse foods, and less time to prepare meals for or secure our child's chances at well-being in a instance www.birthntes.org/Bookletlndex.html (accessed LINICEF and the WHO jointly sponsor the Baby Friendly
themselves and their children. Poor and minor­ moment, or fail at mothering in a moment. And 12 November 2007). See www.plus size pregnancy.org/ Hos pitals Initiative, which explicitly promotes the
ity women have lower rates of breast-feeding than yet, while there is always the possibility that a CSANDVBAC/csemotionalrecov.htm#References (accessed total avoidance of artificial nipples in order to prevent
'
CHAPTER 3 Procreation and Child Rearing CHAPTER 3 End of Chapter Resources S5

nipple confusion. Cf. www. babyfriendlyusa.org (accessed 9. For detailed discussions of why poor and minority women
13 November 2007). breast-feed at lower rates, cf. Blum (2000), and Kukla (2006). Case Study
8. www.cdc.gov/MMWR/preview/mmwrhtml/mm55l2a3.htm,
accessed 13 November 2007. Barb and Ginny are in a loving, committed relationship. deaf. Barb and Ginny would like to use this technique
They would like to start a family together. Since they are to select only embryos that are likely to be deaf, pro­
a lesbian couple, to conceive one of them will have to vided they have no other serious genetic disorders.
References be artificially inseminated using the sperm of a donor. They learn that of the embryos they have created, all
American Academy of Family Physicians. 2000. Promoting La Leche League International. 1997. The womanly art of Ginny is younger and healthier than Barb and seems of them are healthy and are plausible candidates for
and supponing breast-feeding. American Family Physician breasifeeding 6th ed. New York: Plume Books. the better candidate for pregnancy. Before embarking implantation. Some of them are likely to be deaf. They
61(7). Available atwww.aafp.org/afp/ 20000401/2093. Lawrence, R. 1994. Breastfeeding: A guide for the medical pro­ on donor sperm insemination, the fertility clinic treating want only these implanted.
html. Accessed 13 November 2007. fession. 4th ed. New York: Mosby Inc. Ginny runs a few tests to determine whether she has any The clinic is reluctant to honour this wish since it
Aristotle. 1941. Nicomachean ethics. Trans. W. D. Ross. In Murkoff, H., A. E1Senberg, and S. Hathaway. 2002. What to fertility problems. She learns that she has obstructions in means that they would not be implanting the healthiest
The basic works of Aristotle. Ed. R. McKeon. New York: expect when you're expecting. 3rd ed. New York: Work­ both fallopian tubes. She is a resident of Ontario, so she embryos that have been created. In their view deaf­
Random House. man Publishing is eligible for up to three rounds of provincially-funded ness 1s a disability. Barb and Ginny argue that they
Blum, L. 2000. At the breast: Ideol ogies of breastfeeding and Schneider, M. E. 2005. Insurers set criteria for VBAC cover­ in vitro fertilization. have strong moral reasons in favour of their decision.
motherhood in the contemporary United States. Boston: age. OB GYN News. l February. Both Barb and Ginny are deaf. They take a great In addition, there is no law in Canada for forbidding
Beacon Press Smith, G. C,J.P. Pell, A.D. Cameron, and R. Dobbie. 2002. degree of joy in participating in the deaf community, them from doing what they would like the clinic to do.
Cronenwett, L., T. Stukel, and M. Kearney. 1992. Single daily Risk of perinatal death associated with labor after previ­ and they would be unable to live the meaningful lives
bottle use in the early weeks post-partum and breast­ ous cesarean delivery in uncomplicated term pregnan­ 1. Are the values discussed in Savulescu and Gedge
that they now live without participating in this com­
feeding outcomes. Pediatrics 63: 760. cies. JAMA 287: 2684-90 represented in this case? What other values might
munity. They think of themselves as belonging to a
Grady, D. 2004. Trying to avoid a second cesarean: Many Tamaro, J. 1998 So that's whatthey 're for! Breastfeeding basics. be at play in this case?
unique culture, in the same way that many belonging
women find choice isn't theirs. New York Times. 29 Nov­ Avon, MA: Adams Media. to a religion do. They would very much ltke it to be 2. Is it right to think that deafness is a disability?
ember, Al. the case that their child be part of this community Think about this question in terms of how disabil­
Kukla, Rebecca. 2006. Elhics and ideology in breastfeeding and have the same sense of belonging that they have. ity 'is understood in the readings by Gedge and
advocacy campaigns. Hypatia: A Journal of Feminist Phil­ It would also make their lives easier. Of course, it is Savulescu.
osophy 21(1): 157-80. not certain that any of the implanted embryos created 3. What reasons might one provide for refusing to
using IVF would be deaf. honour Barb's and Ginny's request? Is there a
Luckily, the clinic treating Ginny offers pre-implant­ conflict here in terms of what it is legitimate for
ation genetic diagnosis. The clinic is able to run gen­ a parent to want for his or her child? How might
etic tests on the embryos created in order to determine Kukla's feminist view of measuring mothering
Chapter Study Questions whether any of them has a high probability of being illuminate this issue?
1, What are the chief differences between Kukla 3, Does Kukla's claim that it is wrong for reproduct­
and Savulescu in terms of their approach to ive ethics to focus on the early stages of preg­
reproductive ethics? nancy and child-rearing apply with equal force to Further Reading
2. To what extent do Savulescu and Gedge agree Gedge and Savulescu?
Brake E. Millum J. Parenthood and procreation. legal and philosophical perspectives. Cambridge:
about the importance of reproductive freedom? In: Zalta EN, editor. Stanford Encyclopedia of Cambridge University Press; 2010.
To what extent do they disagree? Philosophy [Internet]. 2012. Available from: http:// Parens E, Asch A, editors. Prenatal testing and disabil­
plato.stanford.edu/entries/parenthoodL, Date ity rights. Washington, DC: Georgetown University
Accessed: 7 June 2012. Press; 2000.
Critical Analysis Glover J. Choosing children: The ethical dilemmas Speechley K, Nisker J. Preimplantation genetic diag­
of genetic intervention. Oxford: Oxford University nosis in Canada: a survey of Canadian IVF units. J
Consider the following from the article by Gedge: groups. This question is hardly hypothetical; pre­
Press; 2006. Obstet Gynaecol Can 2010 32:341-347.
natal testing for sex is commonplace, is accom­
•The second line of argument supporting the panied by what some have called femicide, Nisker J, Baylis F, Karpin I, McLeod C, Mykitiuk R,
claim that PND and PGD deprive persons with and coexists with women's inferiorized status editors . The healthy embryo: social, biomedical,
disabilities of rights and privileges is an argu­ and diminished enjoyment of rights in contexts
ment by analogy. Although significant differ­ where such testing is widely practiced.•
ences exist between disability and race, class
or gender, it is useful to consider whether testing Outline Gedge's argument in your own words, pay­
for sex or race, with an institutionalized connec­ ing particular attention to the premises that she relies
tion to termination or negative selection for a on to support her main conclusion. Choose one of the
positive finding would effect a reduction in the premises for evaluation. Tr y to think of at least one
rights and privileges of women or racialized objection to this premise.
'
Buchanan and Brock: Deciding for Others li7

4 consequences. It avoids the risk of affirming a patient's right to choose only when we agree
with the particular decision made.
Respect for autonomy is commonly taken to require a presumption of decision-making
competency; that is, a person is held to be competent unless there is evidence to the contrary.
In the third reading, Cheryl Misak draws on her own horrific experience as a patient in an
intensive care unit to challenge the presumption of decision-making competency in this set­
ting. A substantial proportion-perhaps a maJority-of patients in ICUs suffer from moderate
to severe psychiatric symptoms as a result of pain, stress, sleep deprivation, medications, and

Adults and Decision-making serious illness. As Misak vividly describes, patients can lose touch with reahty and develop
paranoid delusions, in which health care workers are seen as tormentors rather than healers.
In some cases, patients are obviously incompetent; in others, including Misak's own case,
cognitive impairments may be more subtle. The ICU is a challenging setting in which to assess

I
n this chapter, we examine the respect owed to autonomous moral agents in the health decision-making competency. Most patients are intubated (and hence unable to talk) and too
care setting. People who are capable of making decisions for themselves have a right of sick to write, so questions are limited to "yes or no» responses. Further, being on a ventilator
self-determination. That is, they have a right to determine what will and what will not be is an unpleasant experience, and patients may, in their rush to be rid of the breathing tube,
done to them, consistent with their own set of values. In the health care context, the right of make decisions that are contrary to their interests. In these circumstances, it may be better to
self-determination is the foundation of the doctrine of informed consent, which obligates a presume that patients are incompetent to make theu own decisions unless there 1s evidence
physician to discuss treatment options with his patient and obtain the patient's consent before to the contrary. In the ICU, a "policy of doing what is in the patient's best interests, despite
initiating any treatment. While a physician is an expert on the diagnosis and treatment of the fact that this will be viewed as highly paternalistic by the patient herself and by many
disease, most medical conditions have a variety of treatment options and treatments differ in health care professionals and ethicists" may be the best course of action.
important ways in terms of their costs and benefits. For instance, moderate depression can be
treated with talk therapy, exercise, or medication. The choice as to which treatment is best-if
any-depends on the values and life goals of the patient.
But who shall we regard as an autonomous moral agent? The question is tied to whether Ea. Deciding for Others: Competence
a patient is competent, that is, whether she is capable of making a decision for which she Allan Buchanan and Dan W. Brock I The Milbank Quarterly 1986; 64.2: 17-94.
may be held responsible. In this chapter's first article, Allan Buchanan and Dan Brock argue
that the determination of competence ought to be made on a decision-by-decision basis.
The Concept of Competence
Competence depends both on the complexity of the decision and the degree to which the
patient possesses the requisite cognitive capacities, including the ability to understand the Competence as Decision-relative
consequences of the decision, the ability to reason soundly about the various alternatives, and ... The statement that a particular individual is incompetent to make another decision, or even the
possession of a "reasonably consistent and stable" set of values. Setting the standard for com­ (or is not) competent is incomplete. Competence same decision under different conditions. A compe­
petence involves an inevitable trade-off between respecting the patient's self-determination is always competence for some task-competence tency determination, then, is a determination of a
and promoting her well-being. According to Buchanan and Brock, where we draw the line to do something. The particular person's capacity to perform a particular
ought to depend on the consequences of respecting a particular choice. Thus, when treatment Competence concern here is with decision-making task at a particular time and under
is potentially life-saving and relatively free of risk, a patient may be deemed competent to The ability of a person to make a competence to per­ specified conditions....
decision for which she will be held form the task of Decision-making tasks vary substantially in the
accept the treatment but incompetent to reject it. responsible; the capacity to perform
In this chapter's second article, Benjamin Freedman disagrees with Buchanan and Brock, a particular decision making task making a decision. capacities they require for performance at an appro­
and begins by examining what it means for a choice to be responsible. He asks: al a particular time and under Hence, competence priate level of adequacy. For example, even restricted to
specified conditions. is to be understood medical treatment decisions, there is substantial varia­
"Does this entail that the physician may at any time override a patient's judgment on the basis ----- as deci sion-making tion in the complexity of information that is relevant to
that, in the physician's view, the patient has not chosen responsibly? Surely not; to adopt such capacity. But the notion of decision-making capacity a particular treatment decision and that, consequently,
a criterion would defeat the purpose embodied in the doctrine of consent. It would mean that is itself incomplete until the nature of the choice as must be understood by the decision maker. There is,
a person's exercise of autonomy is always subject to review." well as the conditions under which it is to be made therefore, variation in what might be called the object­
For Freedman, a responsible choice is one made by a person who is generally disposed to are specified. Thus competence is decision-relative, ive demands of the task in question-here, the level
act responsibly.To regard someone as responsible is just to say that she generally takes into not global (President's Commission for the Study of abilities to understand, reason, and decide about
account the consequences of her actions and that she is open to rational arguments that a of Ethical Problems in Medicine and Biomedical the options in question.But there is also variation of
different course of action may be preferred. Someone who is responsible is capable of living and Behavioural Research 1982, 1983a). A person several sorts in a subject's ability to meet the demands
with her life plan and takes responsibility for her actions. Shifting the question of respon­ may be competent to make a particular decision at of a particular decision. Many factors that diminish
sibility from the particular choice to the person who is making the choice has important a particular time, under certain circumstances, but or eliminate competence altogether vary er time in
i
Buchanan and Brock: Deciding for Others
58 CHAPTER 4 Adults and Decision-making

to give due consideration to potential future outcomes thought of and said to be more or less competent
Under communication and understanding are
their presence or severity in a particular person. For included the various capacities that allow a person
in a present decision. Reasoning and deliberation to perform many tasks, not just decision-making.
example, the effects of dementia on a person's co�ni to take part in the process of becoming informed of
obviously make use of both capacities mentioned Nevertheless, because of the role competency deter­
tive capacities is at some stages commonly not con­ and expressing a choice about a given decision. These
earlier: understanding the information and applying minations play in health care generally, and in the
stant, particularly in cases the decision maker's values. legal process in particular, it is important to resist
Dementia of borderline competence. include the ability to communicate and the posses­ Finally, a competent decision maker also requires the notion that persons can be determined to be more
A mental disorder characterized by Instead, mental confusion sion of various linguistic, conceptual, and cognitive a set of values or conception of what is good that is rea­ or less competent, or competent to some degree....
memory loss, personality change, may come and go; periods abilities necessary for an understanding of the par­ sonably consistent and stable. This is needed in The central purpose of assessing competence is
and impaired reasoning that may be ticular information relevant to the decision at hand.
the result of a variety of different of great confusion are order to be able to evaluate particular outcomes as to determine whether a patient may assert his or her
sometimes followed by The relevant cognitive abilities, in particular, are often benefits or harms, goods or evils, and to assign dif­ right to decide to accept or refuse a particular medical
underlying causes.
comparative lucidity. impaired by disease processes to which the elderly ferent relative weight or importance to them. Often procedure, or whether that right shall be transferred
are especially subject, including most obviously

-I
In other cases, the what will be needed is the capacity to decide on the to a surrogate.We must, therefore, ask what values are
Cognitive capacities envir onment and the various forms of dementia, but also aphasia due import and relative weight to be accorded different at stake in whether people � -- -- -
Mental abilities, including the behavior of other s may to stroke and, in some values, since that may not have been fully determined are allowed to make such I Informed consent doctrine
abilities to understand, to rationally cases, reduced intellec­ Aphasia An implication of the principle of
affect the relative level of before a particular choice must be made.Competence decisions for themselves. The self-determination that requires
manipulate information, and
decision-making com­ tual performance associ­ The inability to speak either does not require a fully consistent set of goals, much informed consent doctrine ph sician to di cuss treatment
to communicate. temporarily or permanently, � � �
pete nce. For example, ated with depression.... often as a result of a stroke less a detailed "life plan" to cover all contingencies. assigns the decision-making I options with their patients and
often impair competence, Even where cognitive or blockage in the blood flow Sufficient internal consistency and stability over right to patients themselves; obtain their permission before
side effects of medications
function is only min- to the area of the brain
but a change of medication may reduc
Behavior of others may create stresse s
e those effects.
for a person thatimally impaired, ability controlling speech.
to express desires and
- time in the values relative to a particular decision,
however, are needed to yield a decision outcome.
but what fundamental val- initiating treatment; it is well
ues are served by the prac- accepted that a patient may
choose from available treatment
diminish decision-making capacities, but that behav­ Although values change over time and although tice of informed consent? ln G ptions or refuse all treatment.
ior can often be altered, or the situations in which it beliefs may be greatly diminished or absent .... ambivalence is inevitable in the difficult choices faced the literature dealing with -- -- - -
occurs can be avoided.Further, cognitive functioning Understanding also requires the ability to appre­ by many persons of questionable competence con­ informed consent, many dif­
can sometimes be enhanced by familiar surroundings ciate the nature and meaning of potential alterna­ cerning their medical care, living arrangements, and ferent answers-and ways r Well-being -- -
and diminished by unfamiliar ones.A person may be tives-what it would be and "feel" like to be in personal affairs, sufficient value stability is needed of formulating answers-to How well an individual's life
competent to make a decision about whether to have an possible future states and to undergo various experi­ to permit, at the very least, a decision that can be
is going from that individual's
that question have been pro­ I perspective; broadly speaking,
elective surgical procedure if the choice is presented in ences. In young children this is often prevented by stated and adhered to over the course of its discus­ posed, but we believe the what is good for an individual
the familiar surroundings of home by someone known the lack of sufficient life experience. In the case of sion, initiation, and implementation.... most important values at or what is in an individual's self­
elderly persons facing diseases with progressive and I
and trusted , but may be incompetent to make that same stake are: (I) promoting and interest.
choice in what is found to be the intimidating, confus­ extremely debilitating deterioration, it is hindered by protecting the patient's well­
Competence as a Threshold Concept,
ing, and unfamiliar environment of a hospital.... people's generally limited ability to understand a kind Not a Comparative One being, and (2) respecting the r Self-determination
of experience radically different from their own and patient's self-determination. The principle that people have a
Sometimes incompetence will be uncontroversially
Capacities Needed for Competence by the inability of severely impaired individuals to It is in examining the effect I right to determine what will and
own experience complete, as with patients who are in a persistent
What capacities are necessary for a person compe­ communicate the character of their vegetative state or who are in a very advanced state on these two values that the what will not be done to them;
logical blocks -such as fear, the idea that each of us, to the
tently to decide about such matters as health care, to others. Major psycho of dementia, unable to communicate coherently at answer to the proper stan­
also sigmfi cantly impair extent that it is possible, ought to
living arrangements, financial affairs, and so forth? denial , and depression-can --- - - all. Often, however, dard of decision-making have control over our own lives.
about an unwanted
As already noted, the demands of these different the appreciation of information
l, communication Persistent vegetative state defects in the capaci- competence will be found. -- --- ---
decisions will vary, but it is nevertheless possible to or dreaded alternative. In genera A state of-eyes-open ties and skills noted
es to receive,
generalize about the necessary abilities. Two may be and understanding require the capacin unconsciousness· resulting from above as necessary
use the information Standards of Competence:
distinguished: the capacity for communication and process, and make available for catastrophic injury to the brain in
to competence will
understanding, and the capacity for reasoning and relevant to partic ular decisi ons. �hich the capacity for consciousness Underlying Values
•s lost but sleep-wake cycles and be partial and a mat-
deliberation (President's Commission for the Study Competence also requires capacities for reason­ Promotion of Individual Well-Being
e capacities to draw non -v oluntary movements remain. ter of degree, just as
of Ethical Problems in Medicine and Biomedical and ing and deliberation. These includ ·-
- -- -- � whether a patient's There is a long tradition in medicine that the physician's
uences of making a cer­
Behavioural Research 1982).Although these capaci­ inferences about the conseq decision is voluntary or involuntary, informed or first and most important commitment should be to serve
ative outcomes
ties are not entirely distinct, significant deficiencies tain choice and to compare altern uninformed, is also often a matter of degree.Does this the well-being of the patient.The more recent doctrine
good or promote
in any of them can result in diminished decision­ based on how they further one's mean that competence itself should be thought of as of infonned consent is consistent with that tradition if
y rudimentary
making competence. A third important element of one's ends. Some capacity to emplo sometimes partial and possessed in different degrees?
ain outcomes it is assumed that, at least in general, competent indiv[d­
competence is that the individual must have a set of probabilistic reasonmg about uncert It is certainly the case that persons are commonly uals are betterjudges of their own good than others are.
values or conception of the good. will commonly be necessary, as well as the capacity
60 CHAPTER 4 Adults and Decision-making
Buchanan and Brock: Deciding for Others 61

The doctrine recognizes that while the physician com­ Conflict between the Values of Self-determination a particular decision under specified circumstances. requirement of a high ... level of competence pro­
monly brings to the physician-patient encounter medical and Well-being In this sense, setting a standard for competence is vides grounds for relying on the patient's decision as
training that the patient lacks, the patient brings know­ In the conflict between the values of self-determination a value choice, not a scientific or factual matter.... itself establishing that the choice best fits the patient's
ledge that the physician lacks: knowledge of particular and patient well-being, a tradeoff between avoiding good (his or her own particular aims and ends). That
subjective aims and values that are likely to be affected two kinds of errors should be sought. The first error Relation of the Standard of Competence to highest level of competence is required to rebut the
by whatever decision is made .... is that of failing to protect a person from the harmful Expected Harms and Benefits
presumption that if the choice seems not best to pro­
In the exercise of their right to give informed con­ consequences of his or her decision when the decision Because the competency evaluation requires setung a mote life and health, then that choice is not, in fact,
sent, then, patients often decide in ways that they is the result of serious defects in the capacity to decide. balance between the two values of respecting patients' reasonably related to the patient's interests.
believe will best promote their own well-being as they The second error is failing to permit someone to make rights to decide for themselves and protecting them from
When the expected effects for life and health of
conceive it.As is well known, and as physicians are fre­ a decision and turning the decision over to another, the harmful consequences of their own choices, it should the patient's choice are approximately comparable to
quently quick to point out, however, the complexity of when the patient is able to make the decision him- or be clear that no single standard of competence ...can be
those of alternatives, a moderate level of competence
many treatment decisions-together with the stresses herself. With a stricter or higher standard for compe­ adequate. That is simply because the degree of expected is sufficient to provide reasonable grounds that the
of illness with its attendant fear, anxiety, dependency, tence, more people will be found incompetent, and the harm from choices made at a given level of understand­ choice promotes the patient's good and that his or
and regression, not to mention the physical effects of first error will be minimized at the cost of increasing ing and reasoning can vary from virtually none to the her well-being is adequately protected. It is also rea­
illness itself-means that a patient's ordinary decision­ the second sort of error. With a looser or more minimal most serious, including major disability or death. sonable to assume that as the level of competence
making abilities are often significantly diminished. standard for competence, fewer persons will be found There is an important implication of this view that increases (from low to high), the value or import­
Thus, a patient's treatment choices may fail to serve his incompetent, and the second son of error is more hkely the standard of competence ought to vary with the ance of respecting the patient's self-determination
or her good or well-being, even as that person conceives to be minimized at the cost of increasing the first. expected harms or benefits to the patient of acting in increases as well, since a part of the value of self­
it.Although one important value requiring patient par­ Evidence regarding a person's competence to make accordance with a choice-namely, that just because determination rests on the assumption that persons
ticipation in their own health care decision-making is a particular decision is often uncertain, incomplete, a patient is competent to consent to a treatment, it will secure their good when they choose for them­
the promotion of patient well-being, that same value and conflicting. Thus, no conceivable set of procedures does not follow that the patient is competent to refuse selves.As competence increases, the likelihood of this
sometimes also requires persons to be protected from and standards for judging competence could guaran­ it, and vice versa. For example, consent to a low-risk happening increases.
the harmful consequences to them of their own choices. tee the elimination of all error. Instead, the challenge life-saving procedure by an otherwise healthy individ­
Thus, according to the concept of competence
is to strike the appropriate balance and thereby mini­ ual should require a minimal level of competence, but endorsed here, a particular individual's decision­
Respect for Individual Self-determination mize the incidence of either of the errors noted above. refusal of that same procedure by such an individual making capacity at a given time may be sufficient for
The other principal value underlying the informed­ No set of procedures will guarantee that all and only should require the highest level of competence. making a decision to refuse a diagnostic procedure
consent doctrine is respect for a patient's self-deter­ the incompetent are judged to be incompetent. Because the appropriate level of competence prop­ when forgoing the procedure does not carry a sig­
mination, understood here as a person's interest in But procedures and standards for competence are erly required for a particular decision must be adjusted nificant risk, although it would not necessarily be
making important decisions about his or her own not merely inevitably imperfect. They are inevitably to the consequences of acting on that decision, no
sufficient for refusing a surgical procedure that would
life . ... No attempt will be made here to analyze controversial as well.In the determination of compe­ single standard of decision-making competence is correct a life-threatening condition.The greater the
the complex of ideas giving context to the concept of tence, there ts disagreement not only about which adequate. Instead, the level of competence appropn­ risk-where risk is a function of the seventy of the
individual self-determination, nor of the various val­ procedures will minimize errors, but also about ately required for decision-making varies along a full expected harm and the probability of its occurrence­
ues that support its importance. But it is essential to the proper standard that the procedures should be range from low to high .... When the patient's level of the greater the level of communication, understand
underline that many persons commonly want to make designed to approximate. The core of the contro­ decision-making competence is only at the low level, ing, and reasoning skills required for competence to
important decisions about their life for themselves, versy derives from the different values that different the grounds derive only minimally from the fact that
make that decision. It is not always true, however,
and that desire is in part independent of whether they persons assign to protecung individuals' well-being the patient has chosen the option in question; they
that if a person is competent to make one decision,
believe that they are always in a position to make the as against respecting their self- determination. We principally stem from others' positive assessment of
then he or she is competent to make another decision
best choice.Even when we believe that others may be believe there is no uniquely "correct" answer to the the choice's expected effects for life and health....
so long as it involves equal risk. Even if this risk is the
able to decide for us better than we ourselves can, we relative weight that should be assigned to these two At the other extreme, when the expected effects same, one decision may be more complex, and hence
sometimes prefer to decide for ourselves so as to be values, and in any event it is simply a fact that dif­ of the patient's choice for life and health appear to
require a higher level of capacity for understanding
in charge of and responsible for our lives. ferent persons do assign them different weight .... be substantially worse than available alternatives, the
options and reasoning about consequences....
The interest in self-determination should not
be overstated, however. People often wish to make
such decisions for themselves simply because they
Deciding on Standards Study Questions
believe that, at least in most cases, they are in a better of Competence
position to decide what is best for themselves than There is no reason to believe that there is one and only l. How do Buchanan and Brock define competence?
others are.Thus, when in a particular case others are one optimal tradeoff to be struck between the com­ Can a patient be competent to make one decision 2. What are the three main capacities that someone
but not competent to make another? Why? must have in order to be competent? For each, give
demonstrably in a better position to decide for us than peting values of well-being and self-determination,
an example of how someone might lack it in a way
we ourselves are, a part, but not all, of our interest in nor, hence, any one uniquely correct level of capacity that undermines her decisional competence.
deciding for ourselves is absent. ... at which to set the threshold of competence-even for
Freedman: A Moral Theory of Informed Consent 13
-!APTER 4 Adults and Decision-making

Steinbock, B. 1 983. The Removal of Mr. Herberts Feeding Wikler, D. 1 983. Paternalism and the Mildly Retarded. In
Tube. Hastings Center Report 1 3(5): 1 2-15 . Paternalism, ed. R.E. Sartorius. St. Paul: University of
According to Buchanan and Brock, what is the rela­ benefits from a particular procedure, and the stan Tooley, M. 1972. Abortion and Infanticide. Philosophy and Minnesota Press.
tionship between the level of expected harms and dard that should be used to assess competence? Public Affairs 2:37-65.
Warren, M.A. 1973. On the Moral and Legal Status of Abar•
tion. Monist 57:43-6 1 .

eferences
,derson, C.G. , P.M. Pierce, and M.A. Walker. 1984. Have
Nurses and Physicians Signed Living Wills? !letter) New
Gaylin, W 1 982. Competence: No Longer All or None. ln
Who Speaks for the Child?, ed. W Gaylin and R. Macklin,
MM•M A Moral Theory of Informed Consent
32-4 1 . New York: Plenum Press. Benjamin Freedman I Hastings Center Report 1975; 5.4: 32-9.
England Journal of Medicine 3 1 1 :678.
ngell, M. 1984. Respecting Autonomy of Competent Horstman, P. 1975. Protective Services for the Elderly: The
Limits of Parens Patriae. Missouri Law Review 40:215-78.
Patients. New EnglandJournal of Medicine 3 1 0: 1 1 15-16.
Jarvik, L. 1980. Diagnosis of Demention in the Elderly: A
Consent and the Competent
iron, C. 1979. Medical Paternalism and the Rule of Law: A
Reply to Dr. Reiman. American Journal of Law and Medi­ 1980 Perspective. Annual Review of Gerontology and Geri­ . . . A person who has the capacity to give valid con­ experiment upon the subject (contingent, of course,
cine 8:37. atrics 1 :252-61 . sent, and who has in fact consented to the procedure upon obtaining the subject's consent). A recognition
eauchamp, T.L. , and j.F. Childress. 1 983. Principles of Bio­ Katz, J. 1977. Informed Consent: A Fairy Tale? University of in question, has a right to have that fact recognized of the claims of personhood and autonomy, however,
medical Ethics. New York: Oxford University Press. Pittsburgh Law Review 39: 137-74 . by us. We all have a duty to recognize a valid consent reveals this to be a conflict between rights and dut-
eauchamp, T.L, and R. Faden. 1987. A Theory of Informed Lidz, C.W, A. Meisel, E. Zerubavel, M. Carter, R.M. Sestak, when confronted with it. From whence derives this -- ----------
ies. The physician-investiga- ,
Consent. New York: Oxford University Press. and L.H. Roth. 1984. Informed Consent· A Study of Deci­ Autonomy
sion Making in Psychiatry. New York: Guilford Press. right? It arises from the right which each of us pos­ tor has a duty to recognize
edell, S., and T. Delbanco. 1984. Choices about Cardio­ sesses to be treated as a person, and in the duty which consent when validly offered. Possessing autonomy involves
pulmonary Resuscitation in the Hospital. New England Lynn, J., and J. F. Childress. 1983. Must Patients Always Be possessing the capacity to decide
Journal of Medicine 3 1 0:1 089-93. Given Food and Water? Hastings Center Report 1 3(5):2 1-3. all of us have, to have respect for persons, to treat a When the consent is of for oneself in light of one's sober,
rock, D.W 1983. Paternalism and Promoting the Good. In Meisel, A. 1979. The "Exceptions" to the Informed Con­ person as such, and not as an object. For this entails doubtful validity, therefore, reflective values; literally "self-rule.'
Paternalism, ed. R.E. Sartorius, 237-60. St. Paul: Univer­ sent Doctrine: Striking a Balance between Competing that our capacities for person hood ought to be recog­ the physician experiences a - - --
sity of Minnesota Press. Values in Medical Decision Making. Wisconsin Law Review nized by all-these capacities including the capacity conflict between two duties. He will not be ethic­
,uchanan, A.E. 1979. Medical Paternalism or Legal lmper­ 2 : 4 1 3-88. for rational decision, ally well-protected by choosing not to experiment,
ialism: Not the Only Alternatives for Handling Saike­ National Institute on Aging. 1977. Our Future Selves: A Perso nhood , and for action conse­ for there exists the possibility-which, as cases are
wicz-type Cases. American Journal of Law and Medicine Research Plan toward Understanding Aging. Washington: Possessing the qualities that make
National Institutes of Health. • quent upon rational multiplied, becomes a probability-that he is vio­
5 : 1 03-4. one a moral agent, including, in this
---. 1978. Our Future Selves: A Research Plan toward context, rationality and the capacity decision. Perhaps the lating a duty in so choosing. Problems in informed
--. 1983. Medical Paternalism. In Paternalism, ed. R.E.
Sartorius, 6 1-82. St. Paul: University of Minnesota Press. Understanding Aging. Washington: National Institutes of to make responsible choices. worst which we may consent present us with a dilemma. It is no longer
--. 1984. The Right to a "Decent Minimum" of Health Health. do to a man is to deny the case that the burden of proof devolves upon the
Care. Philosophy and Public Affairs 13(1 1):55-78. Peterson, D. 1980. Shooting Case Tums into Vigil. Minne­ him his humanity, for example, by classifying him as would-be experimenter. The would-be abstainer from
--. 1985. Ethics, Efficiency and the Market. Tocowa, N.J .: apolis Tribune, 7 March. mentally incompetent when he is, in fact , sane. It is a experiments may have to prove his case as well.
Rowman and Allanheld. Presidents Commission for the Study of Ethical Problems
terrible thing to be hated or persecuted; it ts far worse These considerations give
:atabresi, G., and P. Bobbitt. 1978. Tragic Choices. New York: in Medicine and Biomedical and Behavioural Research. Liberty to be
1982. Making Health Care Decisions. Volume One: Report. to be ignored, to be notified that you "don't count." us a new point of departure experimented upon
W W Norton. If an individual is capable of and has given valid m investigating problems of
:allahan, D. 1985. What Do Children Owe Their Elderly Washington. Freedman is interested in both
Parents? Hastings Center Report 15(2): 32-37. --. 1983a. Deciding to Forego Life-sustaining Treatment. consent, I would argue that he has a right, as against mformed consent. They show the issue of consent to med cal
:::ope, L. 1980. Doctors Think Mack in Vegetative State. Min­ Washington. the world but more particularly as agamst his phys­ us that there is no "fail safe" treatment and consent to medicai
neapolis Tribune, 20 March. --. 1983b. Securing Access to Health Care. Volume One: ician, to have it recognized that valid consent has procedure which we can fall experimentation. He believes
:::ranford, R.E. , and A.E. Doudera. 1984. Institutional Ethics Report. Washington. been given. (The same applies, of course, with still back upon in cases of doubt. the patient possesses a right
Committees and Health Care Decision Making. Ann Arbor: Reiman, R. 1978. The Saikewicz Decision: A Medical View­ to have her health protected
greater force, with regard to refusals to consent to Rather, what is required 1s by her phys1c1an, but she does
Health Administration Press. point. American Journal of Law and Medicine 4 :233-7.
Robertson, J. 1976. Organ Donations by Incompetents and medical procedures.) The limited force of this claim an exhaustive examination not have a right to be included
Daniels, N. 1985. Just Health Care. New York: Cambridge must be emphasized : it does not entail a right to be in a medical experiment. To be
the Substituted Judgment Doctrine. Columbia Law Review of each case and issue, to see
University Press. included in a medical experiment,
English, J. 1975. Abortion and the Conception of a Person. 76:48-68. treated, or to be experimented upon. It is a most whether or not a valid consent
Rosenberg, G.A . , S.F. Johnson, and R.P. Brenner. 1 977. innocuous right, one which most of us would have has in fact been obtained . . . . there must exist a study that is
Canadian Journal of Philosophy 5 : 1 1 2-24. suitable for the patient and the
Evans, A., and B. Brody. 1985. The Do Not Resuscitate Order Recovery of Cognition after Prolonged Vegetative State. little hesitation about granting . . . . mvestigator must be wil ing to
in Teaching Hospitals. Journal of the American Medical Annuals of Neurology 2 : 167-75. From the patient's point of view, he has a right
Association 253:2236-45. Roth, M. 1983 . Senile Dementia and Related Disorders. ln to have his health protected by the physician, and a
The Requirement of the include her in the study. Thus,
patient has a mere hberty to
Feinberg, J. 1984. The Moral IJmits of the Criminal Law. Volume Senile Dementia: Outlookfor the Future, ed. ]. Wertheimer
mere liberty to be experi mented upon . From the Information be included 1n an experiment,
I: Hann to Others. New York: Oxford University Press. and M. Marais. New York: Alan R. Liss. and the exercise of this liberty 1s
Sartorius, R.E. 1983. Paternalism. St. Paul: University of physician-inves.tigator's point of view, he has a duty The most common locution
Frontline. 1985. What About Mom and Dad? Public Broad­ contingent on other factors.
casting System, 2 1 May. Minnesota Press. to protect the subject's health, and a mere liberty to for the requirement which
CHAPTER 4 Adults and Decision-making
Freedman: A Moral Theory of Informed Cons
ent 15

lam discussing is "informed consent"-we require Capron writes, the information component in valid Paternalism paternalism which under a threat:
"informed consent" to protect a doctor from legal lia­ consent derives in law from the recognition that infor­ we call this duress or coercion. But
Restricting the patient's freedom is antithetical to the the threat need
bility resultant from his therapeutic endeavors, or to mation is "necessary to make meaningful the power to choose in the name of his or her not be overt; and perhaps there need
doctrine of consent. not be a threat
ensure the ethical permissibility of an experiment.
But I believe "informed consent" to be a serious mis­
to decide."2 The proper test of whether a given piece
of information needs to be given is, then, whether the
-----
best interests. An elde rly pati ent Hen e, the majo
chooses to forgo fur­ requirement of

at all to render consent involuntary.
r problem currently engendered by the
nomer for what we do, in fact, want medical practice physician, knowing what he does about the patient/ volumariness. It is typified by the pris­
Antithetical ther life-saving meas­ oner who "volunte
to conform to.. .. subject, feels that that patient/subject would want to For one thing to be sharply ers" for an expenment in the hope
ures. How are we or expectatton
The basic mistake which is committed by those know this before making up his mind. Oulre, improb­ contrasted or mutually incompatible of a reward:
with another. For nstance, to Judge whether or significantly
who harp upon the difficulties in obtaining informed able consequences would not ordinarily, therefore, higher wages, Voluntariness

consent (and by critics of the doctrine) is in believing be relevant information. r------ 'slavery is antithetical to basic not this cho ice is a an opportunity
responsible one?
for 30b train­ The ethical requirement that
that we can talk about information in the abstract, with­ Exceptionally, they will 1 Outre --------
human freedoms.• ing, better health care while
The path between involved in the exp
consent be freely given; consent
that is obta
eriment, a coercion ined under threat or
_ ___,1

out reference to any human purpose. It is very likely be: for example, when I H'gh!y unusual or atypical to a � he hor s o t
� _ : � �is ilem ma involves saying that the favorable repo rs generally regarded
impossible to talk about "information" in this way; but there is a small risk of - degree that evokes surprise. respons1b1ht rt to his parole as 1nval1d.
-- -- ---J y which we require is to be predicated
not on the nature of the particular choice, board. Is the consent which
impossible or not, when we do in fact talk about, or impotence consequent but on the the prisoner offers a voluntar
request, information, we do not mean "information in upon the procedure which the physician proposes to �ature of the patient/subject. What we need to know may be state y consent? The problem
the abstract." If l ask someone to "tell me about those perform upon a man with a great stake in his sexual is whether he is a responsible man ("in gene d more generally thus: At what point does
ral," so to reward render consent invo
clouds" he will, ordinarily, know what I mean; and he prowess. This is only sensible.... �peak), not whether the choice which has been made luntary? ...
Our conclusion, then, is that the informing of ts resp�nsible In this way, we avoid the This problem may be clarified by the
will answer me, in the spirit in which he was asked, by danger of examples. Imagine an upp following
virtue of his professional expenise as an artist, meteor­ the patient/subject is not a fundamental require­ upholding as "responsible" only those choi er middle class individ­
ces which ual, who can provide for his
ologist, astronomer, soothsayer, or what-have-you. The ment of valid consent. It is, rather, derivative from we �u:selves feel are good choices. We can family all of their needs
and do and m st of the amenities of
meteorologist will not object that he cannot tell you the the requirement that the consent be the expression a a�mll mto the community of responsible pers � civilized life.Let us say
ons indi� that this person is offered
-�-- - - - - - - - - optical refraction index responsible choice. The two requirements which l do v1duals w�o make choices with which we do one hundred dollars to
not agree. cross the street-if you like
Soothsayer of the clouds, and there- see as fundamental in this doctrine are that the choice In th1 s �ense, responsibility is a dispositi , make It one thousand
A person in many traditions, including _ onal or ten thousand dollars? He
fore that he cannot "fully be responsible and that it be voluntary. � _ ha racte nsuc. To say that someone is a responsi chooses to cross the
the Classical Western tradition, who ble street. Is his choice involuntary? Des
answer" your question. He md1v1dual means that he makes choices, pite the substan­
is said to be able to predict typically, on tial reward, I think mos
the future. knows that you are asking the basi� of reasons, arguments, or beliefs- t of us would agree that the
The Requirement of Responsibility and that consent was freely offered (and
- - - - - - - - _, him with a given end in he remams open to the claims of reason, so would that we should
that fur­ have such problems!).
mind, and that much information about the cloud is What is meant by saying that the choice must be ther rational argument might lead him to
change h'1s Consider a person who deeply wants
irrelevant relative to that purpose. "responsible"? Does this entail that the physician mm . d. It i� to say that a person is capable of mak to be an
ing astronaut. �e is told that as part
That this "abstract information" requirement is may at any time override a patient's judgment on the and carrying through a life-plan-that he _ of the prog ram he
is prepared must pa ucip ate in experiments to determine resist­
not in question in obtaining valid consent is hardly basis that, in the physician's view, the patient has to act on the basis of his choices. It is to �
_ say that a ance to h1gh-G conditions.
Is his consent to this invalid,
an original point, but it is worth repeating. One of the not chosen responsibly? Surely not; to adopt such a �erso� is capable of living with his life-plan; he can mv lu tary? I thin
leading court opinions on human experimentation criterion would defeat the purpose embodied in the ltve w1�� �he consequences of his choi � � k not. We would say, this is part
ces, he takes of his Job; he should have
puts it like this: " ... the patient's interest in infor­ doctrine of consent. It would mean that a person's responstb1l1ty for his choices.s Of course, non expected it; and if he can't
e of these st nd the �eat, he should get
mation does not extend to a lengthy polysyllabic dis­ exercise of autonomy is always subject to review. are absolut�s: all responsible people are at � out of the kitchen.In this
times pig­ vem, consider Eve! Knievel
course on all possible complications. A mini-course Still, some such requirement would appear to be headed, at umes short-sighted, at times fligh , a financially prosperous
ty. That is ma , who is offered millions
in medical science is not required ."1 ... necessary.A small child can certainly make choices.3 to say, all responsible men at times act irres �
ponsibly. devil stunts.His choice may
of dollars lo perform dare-
The proper question to ask, then, is not "What Small children can also be intelligent enough to Should the lack of responsibility persist, _
of course, to be bizarre, even crazy: but
information must be givenr That would be pre­ understand the necessary information. Yet surely we an extreme degree, we may say that the has Evel Knievel
person has his reward rendered it unfr Robe rt Craig Knievel (1938-
mature: we must first know for what purpose infor­ would not want to say that a small child can give valid left the community of responsible folk. ee?
Finally, consider a man 1997) was a daredevil
mation is needed. Why must the patient be informed? consent to a serious medical procedure.4 The reason motorcyclist and entertainer who
who is informed by h'is doc-
Put that way, the answer is immediately forthcom­ for this is that the child cannot choose responsibly. . rose tO prominence from the late
ing. The patient must be informed so that he will We are faced with a dilemma.On the one hand, it Voluntarism and Reward t�r t h at h e will most likely 1960s to early 1980s. Perh
The othe: requirement of valid consent is that die unless he has open-heart his most famous stunt involvaps
know what he is getting into, what he may expect appears that we must require that the choice be respon­ it be given surg ery. His "rew ard" ed
from the procedure, what his likely alternatives are­ sible. To require only that the choice be free would voluntanly. The choice which the consent for an unsuccessful attempt to jump
expresses con sent ing is his life;
in short, what the procedure (and forbearance from yield counterintuitive results. On the other hand, if must b� freely made.We all know som the a rocket powered motorcycle
_
which, if satisfied, make us say that
e cond ition s penalty for not consenting is �cross the Snake River Canyon
it) will mean, so that a responsible decision on the we do require that the choice made be a responsible a consent has death. Does this 1n 1974.
matter may be made. This is the legal stance, as well one, we seem to presuppose somebody which shall been given involuntarily. The case whic mean this
_ h immediately man cannot give the
as, l think, a "commonsensical" stance; as Alexander judge the reasonableness of choices; this represents a spnngs to mind occurs when an indi _ doctor valid consent-morally
vidual succumbs vahd consent-to proceed?
Misak: Psychosis and Patient Autonomy 67
86 CHAPTER 4 Adults and Decision-making

There are two distinctions which, I think, go a that the reward does is to bring us up to a level of Notes
living to which we are entitled, and of which we have 1 Cobbs v. Grant, 502 P. 2d L 11. 5. T�is gives us the hnk between "responsible• in the dispos­
long way towards dispelling these problems.First, I
been deprived by man-then the "reward," 1 think,
2 Alexander M. Capron, "Legal Rights and Moral Rights," in itional sense explained here, and "responsible· in the blame­
think it must be granted that natural contingencies Hilton, et al., eds., Ethical Issues in Human Genetics (Plenum sense of the word ("I'll hold you responsible for that.").
constitutes duress. A reward which accrues to one
(«acts of God," things which come to pass naturally, Press, 1973), 228. 6 The ca veat must be added: natural contingencies do not have,
who has achieved this level, or who can easily achieve _
those contingencies which we cannot hold anyone
3. The counter-suggestion may be made that chi ldren cannot as their sole result, the rendering of a person unfree, in the

responsible for) do not render a person unfree, nor do it (other than by taking the reward option), and which really make choices. This would, I thmk, put too great a weight sense which vitiates consent· a man's brain tumor can make
hence serves only to grant us "luxury" items, does not
upon the requmment of voluntarism. We would be recruiting the man an idiot, schizophrenia can make a man msane, but
they render unfree the choices which a person makes the concepts of choice and volition to do aJob which they have these do not s� much affect a person's volition as they do
constitute duress, and hence does not render choice _
in light of those contingencies.6 not been designed for. disturb his enure psychic structure.
That natural contingencies do not render a man unfree, no matter how great this reward may be. 4. I am speaking of course in the moral, not the legal, context. 7. David Daube, quoted in Henry K. Beecher, Research and the
The rewards above the moral subsistence level are h may be that in an emergency a child may, in the absence of Individual: Human Studies (Boston: Little, B rown, 1970), p. 146.
unfre e is a point which is apt to be forgotten i n
true rewards. In contrast, we may say (with some
his parents, give legally valid consent.
the present context. l a m not-in the morally rel­
evant sense-lacking in freedom because I cannot, touch of metaphor) that the "rewards" which only
unaided, fly through the air, or live on grass.Nor am bring us up to the level to which we were in any
l unfree because my heart is about to give out.Nor am event entitled are properly viewed as functioning
I unfree when, recognizing that my heart may give as threats: "Do this, or stay where you are:"-when ii#iiJ=iM ICU Psychosis and Patient Autonomy:
out, I choose to undergo surgery. I may, of course, you should not have been "where you are" in the first Some Thoughts from the Inside
be so crazed by knowing that I am near death's door place.The astronaut, Evel Knievel, and the upper­ Cheryl Misak I Journal of Medicine and Philosophy 200s; 30(4J: 411_30•
that l am in a state of general incompetence, and middle-class street-crosser are being granted "luxury"
hence must have the choice made for me; but general items, and hence are capable of givmg free consent.
But consider a man who will not be admitted to the
Introduction
incompetence is not in question here.The distinction
between choices forced by man, and choices forced hospital for treatment unless he agrees to be a subJect ... In this paper I draw on my rather grim experi­ capacity to run their lives for themselves, even if there
by nature, is, then, of importance. in an experiment (unrelated to his treatment).Those ence of septic shock, ARDS (acute respiratory distress is reason to think that they are making a mistake­
The second distinction is between those pres­ who feel, as I do, that we are, here and now, morally syndrome), and multiple organ failure. ... ARDS is needs to be rethought in the critical care context.l ...
sures which are, and those which are not, in Daube's entitled to medical treatment would agree, I trust, that a severe lung injury
words, «consonant with the dignity and responsibility this illegitimate option coerces the man into agreeing. Septic shock caused by one of a
ICU Psychosis
of free life."7 I would explain this as follows: there are Or consider a man who has religious scruples against A life-threatening condition in which number of things:
donating blood, who takes his daughter to a hospital an overwhelming systemic infection sepsis, trauma, bums, There are two sorts of awful- 1cu psychosis
certain basic freedoms and rights which we possess leads to low blood pressure and ness involved in what the Patients in intensive care units
which entitle us (morally) to certain things (or states of for treatment. He is told that the doctors will not treat multiple organ failure. Septic shock
and so on. It is usu­
her unless the family donates a certain amount of ally accompanied by medical profession charm- can experience a range of
affairs). We would all, no doubt, draw up different lists requires treatment in an intensive psychiatric symptoms due to
of these rights and freedoms; but included in them blood.His freedom has been nullified; his "consent" care unit and, despite treatment, multiple organ failure: ingly calls a serious "insult." pain, stress, sleep deprivation,
would be safety of person, freedom of conscience and to donating blood 1s morally invalid. Similarly, the has a mortality rate of 30 per cent mechanical ventila­ One sort arises from what medication, and serious illness.
college student whose grade is contingent upon his or greater. tion and other forms is physically going on: the Thought processes become
religion, a right to a certain level of education, and, for pain, the extreme discom- abnormal and lose contact
some of us, a right to some level of health care. When participation in the instructor's psychological experi­ of Ii fe-support are
ments is not validly consenting to serve. He is entitled required. It is thus a wide-ranging descriptor, catch­ fort that comes with mech- with reality. Symptoms may
the «reward" is such as only to give us the necessary includ� a�itat,on, disorientation,
conditions of these rights and freedoms-when all to have his grade based upon his classroom work.... mg a significant proportion of long-stay patients in a anical ventilation, and the hallucinations, and paranoia.
medical-surgical intensive care unit (ICU). By the time physical panic induced by
I reached the hospital, I was already on death's door.I the suctioning process and the attendant inability
Study Questions was put on a ventilator and spent the next few weeks to breathe....
in multiple organ failure and a drug-induced paralytic But there is a second, perhaps even worse, sort of
coma, with minimal chances of survival. When I even­ awfulness: that of stepping well over the fuzzy line
l. According to Freedman, what are the three elements 3. What does it mean for consent to be voluntary? Does
an offer of money mvalidate consent? tually resurfaced, I was emaciated, virtually lungless, that separates sanity from madness. Numerous stud­
that are necessary in order for consent to be valid?
and incredibly weak. ... ies have looked at the mental distress experienced by
Which two are "fundamental?" Why? _
From my reflections on this set of experiences, ... I ICU pauents with ARDS. Of those surviving patients
2. What according to Freedman is a "responsible will �r�ue that the principle of patient autonomy-that
choice?" How does this position avoid paternalism? :'ho remember anything at all, many report harrow­
phys1c1ans must respect the intrinsic value of people's mg psychotic episodes.These are usually "nightmares

'
88 CHAPTER 4 Adults and Decision-making
Misak: Psychosis and Patient Autonomy eg

often of a bizarre and extremely terrifying nature," and the struggle into consciousness, but l certainly would come round, show me X-rays of my lungs and
imagined the police and the bullying. surprise at how quickly I was rebounding. I was in
hallucinations, and paranoid delusions-typically explain how they were not ready.My glares, how'ever,
fact a psychological mess and should not have been
-- -- -- --- of a nurse or a doctor lt thus strikes me as nght when I read that these were eventually persuasive and I was extubated a day
Delusion
A false belief that is strongly
7 trying to rape, murder,
or otherwise harm the
traumatic experiences in the ICU "may be as emotion
ally devastating as intra-operative awareness during
or two before it was thought maximally desirable.
More seriously, once I was moved to the ward I man­
taken to be fit to participate in decisions.I was filled
with what I took to be well-concealed fear and loath­
held despite evidence to the
contrary.Delusions may be a
prominent feature of a variety
I patient.2. ..
The thing that makes
anaesthesia." (Schelling et al. 1998, p. 658) Both are
associated with a highly elevated incidence of post·
aged to get released after just two nights, despite all
the excellent reasons offered to the contrary.
ing for most of my lifesavers and caregivers.And I was
overwhelmed by the determination to be extubated

I traumatic stress disorder m the weeks and even and to get out of there.
of mental illnesses, including these phenomena espe­ I was of course most grateful for both of these
years after discharge....Indeed, as the dear-headed It is not clear that competency can be measured
schizophrenia, bipolar affective cially terrifying and thi�gs. But even at the time I wondered why my
o�l� by taking into account present abilities and cap­
I
disorder ('manic depression"), insidious is that unlike thoughts started . . . desires were being taken into consideration: could
and psychotic depression.
,-- ---- --
after I came round, the Post-traumatic stress they not tell, I wondered, that I was a lunatic? And
_
acmes .It might well be that difficulties in the past are
-- -- --- __, ordinary nightmares and affecting, under the radar screen of the tests one's
more like paranoid delu­ following struck me for­ ] disorder once I was at home, in an alarmingly fragile state, it
sions, they tend to occur in real time and to hook onto
slices of external reality. One takes an actual phys­ I
cibly. Dying is easy: it is A psychiatric syndrome that
the coming back that is may occur days, months, or
years after an event involving
was not clear to me or to my family that th is was the
best outcome.
functioning in the present.One might be able t� com­
plete all the tests with the required accuracy and yet
be haunted by what has recently happened....
ician or nurse in the ICU, whips up a violent conspiracy unimaginably difficult. the threat of Injury or death.
theory around that person, and then has the conspir­
acy play itself out in the midst of actual conversations
and medical procedures....One quite literally loses
It ought to be clear
IIndividuals may experience
that mental distress of repeated upsetting memories
this sort ... has ... of the event, feel detached, and
Autonomy in the ICU
Consequences of Irrational Decisions
Difficulties in Assessing Psychological Status
The last a'.gument ...has to do with the testing for
L psychol?g1cal well-being in the ICU: ...most patients
one's grip on what is true and what is false.... severe consequences for have diffrcu1ty concentrati� Wh�le the principle of respect for patient autonomy
has u that health care professionals ... should always are ventilated and this renders concurrent assessment
For weeks after coming to consciousness, my cen­ the pat ient-physician
treat ... the p� tient who passes tests of competency of _ psychological status very difficult (Turnock 1997).
tral preoccupation was the attempt to sort out which relationship.Most importantly, l shall argue, it brings _
as a full paruc1pant on the decision-making team, it It 1s ...easy to see when a patient is in an agitated or
memories were of actual events and which were into question just how seriously we ought to take the ·
seems clear that this principle should not always be hyperacuve ... menta 1 state.... It is also relatively
imagined.... But much of the required sorting had principle that the competent-seeming patient ought
upheld in critical care medicine. It may well be a easy to assess a patient who can in some way com­
to wait until l was extubated, when 1 could question to take part in decisions about his or her care or be
trumping principle with respect to end-of-life decision­ municate and who cannot remember the names of her
others.I asked my husband whether there really was part of the decision-making "team.�
making, resuscitation and continuation of life-support, children, does not know that she is in a hospital, and
a Christmas party (this was in April), at which the
but ...not ... for more routine treatment matters.To so on. Patients in these states would never be taken
ICU physicians drank copious quantities of alcohol
Extubation make this suggestion plausible, I will offer three argu­ to be psychologically sound or competent.
and proceeded to parade, ridicule, and humiliate the
A second kind of mental distress m the ICU con­ ments.The first is, as Franklin and Rosenbloom (2000) But assessments of psychological status are much
most pathetic patients, myself included, much to the
p�inted out, ...that an irrational decision taken by a more difficult in the face of quiet or hypoactive mal­
mirth of all.Part of me knew that this could not have tributes to the problematic status of the principle of _
cnucally 111 patient is likely to be catastrophic. functioni�g, especially when the patient is having
happened, but it seemed so real that part of me could patient autonomy: the i ncredibly intense and single­
tr_ouble with communication.And they are even more
not believe that it did not happen. 1 think that I will minded desire to be extubated and then released,
difficult when the quiet malfunctioning is subtle, but
never quite shake that "memory" of being completely whatever the costs.. ..Trying to rip out the tube Seeming to be Competent
nonetheless devastating.Indeed, I want to argue that
wretched, physically restrained, unable to speak, and lodged in one's throat 1s ,- __ ____ The other two arguments note that it is far from clear
assessments of this kind of change i n mental status
at the mercy of that band of cruel sadists ... who, in a frequent phenomenon: Edubated that ICU patients are competent, even when they seem
are pretty much impossible.Given the prevalence of
reality, selflessly fought night and day to save my life. the technical term is the I The removal of the breathing to be. The first of these . . . is an anecdotal appeal
these kinds of situations, my suggestion is that the
The most persistent delusion began as 1 first brilliantly understated tube from the patient's trachea. to my own experience and cannot be generalized
principle of patient autonomy in the ICU needs to be
struggled into consciousness....The pain and dis­ "unplanned extubation." �- -- -- -- -- --- ----- in an unpro blem-
1 was so desperate that l had a series of hallucina­ rethought.
comfort were unspeakable and certain of the medical Walter Benjamin atic way. I appeared
tions in which "the team" went round to each bed and (1��!2-1940) A German literary To appreciate the point I am trying to make, look
staff were standing over me with the pol ice, trying to comp etent-I was
�nt1c and philosopher.His writings at the current methods of assess ment of psychological
bully me to lay charges against a...student....The merrily extubated patient after patient, bypassing my app ropriately respon-
mclude works on 19th century life in status... . E.W.Ely's . . . Confusion Assessment
delusion involving the bullying was so convincing bed altogether, despite my imagined frantic waving Paris, German theatre, and Marxist sive to questions and Method for the Intensive Care Unit (CAM-ICU) is a
that, once I had properly resurfaced, it was almost and pleading. philosophy.After the fall of France proppe d up in bed method for measuring delirium, especially the most
impossible for me to discard the belief that a cer­ I managed to communicate this desperation to he eluded an arrest warrant from ' reading ... a biog-
the G estapo, only to be captured by common�� missed subtype: hypoactive or non-agi­
tain physician had tried to make me lay the charge. the nurses and physicians, notwithstanding the fact _ raphy of Waller
Spanish authorities in September tated delmum.He argues that it is unrecognized in
Again, what is unusual about these delusions is that that l could not speak and was too weak to write. l Be nJ· am in. Th e
1940 • Ra ther t han be turned over to 66 to 84 per cent of patients.3
they are a mix of fact and fiction: I didn't imagine did not want my already-traumat ized small children Nazi custody, he committed suicide medi cal perso nnel
the distinctive thump of the machines, the pain, the
background context, the physicians and nurses, ...
to visit until ...l was off the ventilator and ...I was
ferocious in my desire to see them.Various physicians
0n 6 September 1940
� _==-._j
. seemed impressed
In many lCUs the test for quiet mental distress
is informal: finding out whether patients can obey
and expressed their commands and whether they know who they are
70 CHAPTER 4 Adults and Decision-making Misak: Psychosis and Patient Autonomy 71

talking to, the names of their children, and so on. needs studying is not merely over-arching delusional the capacity to make his or her own choices. Given we've given them." (2002, p.219) I want to add a twist
CAM-ICU allows for a more precise and standard­ and disorganized states in which the patient is so con­ what we know about the prevalence of quiet delirium to this claim: patients may clearly want that freedom
ized measure. It is based on the O�\t-1\-modified fused that he or she is unable to respond appropriately in ICU settings, how hard it is to detect subtle mental at the actual decision-making time.But on reflection,
for non-verbal (i.e.• intubated) patients-and is con- to very simple questions, but the whole phenomenon weakness relevant to competence, and the reasonable patients of ten see that it is better to be steered or over­
of mental failings caused by critical illness ....

I
ducted in less than two desire to mask mental weakness by under-reporting it ruled.. .The point is that patients find themselves m
DSM•IV minutes . . . . The tester The anecdotal argument can be joined to the bet­ (in order to be extubated and then released), this pre­ extraordinarily difficult and complex predicaments.
The fourth edition of the Diagnostic

11
asks the patient to do ter argument.... I would have often scored very well sumption seems out of place in the ICU.... Our principles must be subtle enough to account for
and Statistical Manual of Mental such things as squeeze on tests such as the CAM-ICU....I cannot remember My suggestion is that it is better to go on the
Disorders, the standard text for those predicaments.
his or her hand whenever being tested when I was in the grip of a quiet delusion, policy of doing what is in the patient's best interests,

·I ------
the classification and diagnosis of Perhaps we ought to recognize that physicians ...
psychiatric disease published by the he recites, say, the letter but ... the very nature of ICU delusions is that they despite the fact that this will be viewed as highly must, on the one hand, see the patient as an autono­
American Psychiatric Association. "N in a list of 10 recited are a mix of fact and fiction and it may be possible to paternalistic by the patient herself and by many mous person who ought to be in control of his or her
__,,
letters and to indicate respond accurately to simple questions in the midst of health care professionals and ethicists. Perhaps this ltfe and they must, on the other, see the patient as
which 5 of 10 pictures (of common objects) has been such a mixed state. During my non-delusional states, kind of suggestion can be made only in those soci­ a medical problem in need of the best solution....
shown earlier in a series. when I was trying to sort out what had been real and eties, in which paternalism in the medical profession They must see the patient as a person, but also as a
Like the less formal ways of assessing confu­ what had not been real and to determine whether the has been significantly eroded . .. . The suggestion physical body on which they need to act, often in hor­
sion, the CAM-ICU tests for some minimal degree of physicians and nurses were on my side or not, I easily is, therefore, that we . .. find a reasonable middle rific ways that are in tension with seeing the patient
clear thinking, recognition, and memory.Indeed, the passed the tests.... My mental malfunctioning was position between patient autonomy and paternalism. as an individual with desires, needs, family, and
characterization given of delirium is that a patient's such that I appeared perfectly fine, but nonetheless Atul Gawande, a surgeon who has written exten­ friends .... This is difficult. ... But its problematic
"ability to receive , process, store, and recall informa­ I still had roving bouts of overwhelming suspicions, sively on his profession, is of the same view. He has nature should be reflected in our thoughts about how
tion is strikingly impaired." (Ely, Inouye et al. 2001b, conspiracy theories, etc. said ...that "the new orthodoxy about patient auton­ physicians should treat their patients, ...not hidden
p. 2793) Most of the work on delirium ...is aimed The tests ... are not fine-grained enough to be omy has a hard time acknowledging an awkward or simplified by a presumption that is too crude an
at identifying it with the goal to discovering whether sensitive to those quiet mixed states and they are not truth: patients frequently don't want the freedom that instrument for the subtle phenomenon in question.
delirium contributes to poor outcomes4 and whether fine-grained enough to be sensitive to those patients
it can be reduced and treated .... But ...whether or who are sane enough to be trying to sort out their
not a patient is delirious will inevitably be a part of confused mental states while trying to maximize Study questions
any discussion of competency.That is. despite the fact their chances of being extubated and then released.
that the CAM-ICU was not developed as a competency Disturbed mental states need not be marked by agi­
1. What is ICU psychosis? How does it interfere with a 3. Why does Misak believe that the presumption of
instrument, it will be hijacked for this purpose. And tation or even by current hallucination and inatten­ patient's decision-making capacity?
it will not serve well.... tion .. . . The available tests are tests for minimal decision-making competency should not apply in
2. Describe the challenges in assessing decision-mak­ the ICU context? Do you agree?
The problem is this: how can you know when mental capacity.A patient might pass them but none­
mg competency in an ICU patient.
you are accurately measuring quiet and subtle mental theless not be competent because he or she is afraid,
distress and malfunctioning? ... The only possibil­ desperate, tired and traumatized.
ity is to look at the way that mental state is mani­ My anecdotal observations are supported by the
festing itself in behavior. Given that you cannot ask recent literature.Ely, Inouye and colleagues (2001b) Notes
complex questions of an intubated patient and get reported that between 39 to 42 per cent of alert or eas­ 1. I m ake this point, in an abbreviated way, in Misak (2004b). 3. See also:http://www.1cudelirium.org.
suitably complex answers, the range of behavior avail­ ily aroused patients who could make eye contact and 2. See, for instance, Schel ling et al.(1998) and the testimonials 4. Itdoes: seeEly. Shintani et al.(2004).
able is minimal: only gross behavior ("squeeze my follow commands were found to be delirious, using the on theARDS support website: www.ARDS.org.
hand, indicate which pictures ...") is possible.And tests for striking delusional and disorganized states....
only simple questions can be answered. Quiet and These are patients "who are usually assumed to be cog­ References
subtle mental malfunctioning in intubated patients nitively intact by ICU personnel." Imagine how many Ely. E.W., Gautem, S., Margolin, R., Francis,]., May , L., Sper­ Ely, E.W. Shintani , A.• Truman, B .• Speroff, T., Gordon, S.M.,
is extremely difficult to measure.... would be found to be cognitively impaired if we could off, T.. Truman , B., Dittus, R., Bernard, R.• & Inouye , Harrell, F.E., Inouye , S.K., Bernard, G.R.. & Dittus, R.S.
A patient might have a subsyndromal amount of test for more subtle (i.e., non-striking) impairment.... S.K.(2001).The impact of delirium in the intensive care (2004).Delirium as a predictor of mortality in mechanic­
brain dysfunction that could be completely missed unit on hospital length of stay.Intensive Care Medicine, ally ventilated patients in the intensive care unit.Journal
by the CAM-ICU and by 27(12), 1892-900. of the American Medical Association, 291(14), 1753--02.
Subsyndromal any other test that could Implications for A1ltonorny Ely, E.W., Inouye , S.K, Bernard, R., Gordon, S., Francis,]., May, Franklin , C., & Rosenbloom, B. (2000). Proposing a new
Exhibiting symptoms that are Let us return to the principle of patient autonomy: ... L, Truman , B., S peroff, T., Gautam, S., Margolin, R., Han, standard to establish medical competence for the pur­
be administered to intub­
not sufficiently severe to meet R.P., & Dittus, R.(20016).Delirium in mechanically venti­ pose of critical care intervention.Critical Care Medicine,
ated patients....In order we are to assume competence when no explicit evidence lated patients: Validity and reliability of the confusion assess­
the requirements of a to assess competency, to the contrary exists. And when we assume compe­ 28(8), 3035-8.
particular diagnosis. ment method forthe intensive care unit (CAM-ICU).journal Gawande, A.(2002). Complications: A surgeon'.s notes on an
the phenomenon which tence, we are to take the person in question as having of the American Medical Association, 21(286). 2703-10. imperfect science. New York: Henry Holt.
72 CHAPTER 4 Adults and Decision-making
CHAPTER 4 End of Chapter Resources 73

Misak, C. (2004). The critical care experience: A patients M., Preuss, U., Bullinger, M., Schuffel, W, & Peter, K. 1. Does the fact that Mr. Starson disagrees with
view. American Journal of Respiratory and Cntical Care (1998). Heath-related quality of life and post-traumatic 3. Do you think he is competent to refuse treat­
his physicians about his diagnosis mean he is ment? Why?
Medicine, 170(4), 357-9. stress disorder m survivors of the acute respiratory dis­ incompetent?
Schelling, G., Stoll, C., Haller, M., Briegel, J., Manert, W, tress syndrome. Critical Care Medicine, 26(4), 651-9.
Hummel, T., Lenhart, A., Heyduck, M., Polasek,]., Meier, 2. Does he understand the consequences of treat·
ment with antipsychotic medication and the
refusal of treatment?

Chapter Study Questions Further Reading


Buchanan and Brock argue that the standard of the choice. Is this compatible with Misak's Buchanan AE, Brock OW. Deciding for others: the cmaj.ca/content/162/11/1585.full.pdf+html. Date
for competence should vary in accord with the argument against the presumption of decision­ ethics of surrogate decision making. Cambridge, accessed: 6 June 2012.
consequences of the particular decision. Using making competency in the ICU setting? Why? UK: Cambridge University Press; 1990.
Evans KG, Henderson GL. Consent: a guide for Canadian
Freedman's notion of "responsible choice,• critique 3. Can voluntary choices be made by patients in the College of Physicians and Surgeons of Ontario. Consent physicians [Internet]. Available from: http://www.
this view. Who do you think is right and why? ICU setting? Why? to Medical Treatment (Internet]. Available from: cmpaacpm.ca/cmpapd04/docs/resource_files/ml_
2. Buchanan and Brock argue that the standard of http://www.cpso.on.ca/po1icies/po1icies/defau It. guides/consent_guide/com_cg_informedconsent-e.
competence ought to vary with consequences aspx?ID=1544. Date accessed: 6 June 2012. cfm. Date accessed: 6 June 2012.
Doig C, Burgess E. Withholding life-sustaining Faden RR, Beauchamp TL. A history and theory of
tre atment: are adolescents competent to informed consent. New York: Oxford University
Critical Analysis make these deci sions? CMAJ (In tern et], Press; 1995.
2000;162:1585-8. Available from: http://www.
Consider the following from the article by Freedman: which hence serves only to grant us 'luxury'
items, does not constitute duress, and hence
"When the 'reward' is such as only to give us
does not render choice unfree, no matter how
the necessary conditions of these rights and
great this reward may be.•
freedoms-when all that the reward does is to
bring us up to a level of living to which we are
entitled, and of which we have been deprived Outline Freedman's argument in your own words,
by man-then the 'reward,' I think, constitutes paying particular attention to the premises that he
duress. A reward which accrues to one who has relies on to support his main conclusion. Choose one
achieved this level, or who can easily achieve it of the premises tor evaluation. Try to think of at least
(other than by taking the reward-option), and one objection to this premise.

Case Study
Scott Starson is a self-taught physicist with a long hist­ believes that it slows his mental abilities and hinders
ory of mental illness. Since 1985, he has been in and out his ability to do creative work in physics. He describes
of psychiatric facilities and Is diagnosed with schizoaf­ his work in physics as the most important source of
fective disorder, a disease characterized by distortions of meaning in his life. Being deprived of the ability to
reality and elevated or depressed mood. In 1998, when continue his work would, in his words, "be like death."
he was 42 years old, he was arrested for threatening His treating physicians believe that his condition
to kill fellow residents of a Toronto townhouse and a is deteriorating. They point to the fact that he has
police officer. When a court found him not responsible been unable to publish since the mid-1980s, in their
for his actions due to mental illness, he was transferred view, due to his illness. They also point to a variety of
to a psychiatric hospital where he adamantly refused delusional beliefs held by the patient, including that he
antipsychotic medication prescribed by his physicians. continues to work from his hospital room with an inter­
Mr. Starson, who insists on being called "Professor national network of scientists, even though his room
Starson,• has no formal training in physics, but has has no phone or computer. Antipsychotic medication,
published several papers with Pierre Noyes, a physics they believe, represents his best chance for recov­
professor at Stanford University. He disagrees with ery. Due to his aggressive and threatening behaviour
the diagnosis made by his psychiatrists. Furthermore, when untreated, he is unlikely to be released from the
having taken antipsychotic medication in the past, he psychiatric hospital without treatment with medication. '
,PTER 5 Conflict about AppropriateTreatment

se Study
nuel Golubchuk, an 84-year-old Orthodox Jewish They argued that as an Orthodox Jew, he would have
,, was admitted to Winnipeg's Grace Hospital on 26 wanted the treatments continued so long as he had
ober 2007 with pneumonia and an irregular heart­ a heartbeat. Withdrawing treatment now would, in the
Lt. Prior to his admission to hospital he had numer­ family's view, amount to the physicians 'playing G?d."
medical problems. Golubchuk was very badly injured Once dialogue reached an impasse, communica­
t fall in 2003, that left him with brain damage and tion between the family and physicians stopped. No

Equipoise and Clinical Research


inability to care for himself. After his head i�jury, effort was made to bring in an ethicist or a neutral
•sicians predicted that he would have no quality of third party to attempt to arbitrate the co�flict. When
While Golubchuk needed constant care, his family physicians sought to unilaterally remove life-support,
alled fondly being able to take him bowlin� and to the family obtained a court injunction to stop them
_

I
y bingo, and they believe he had a good �uahty of life. from doing so.
In the current admission, however, his very poor 1. According to the physicians in this case, is con­ n this chapter, our focus is the physician's obligations to her patient in the context of clin­
1dition did not improve after a week in the intensive ical research. Specifically, we ask, may the physician, consistent with her duty to provide
tinued treatment an instance of quantitative or
·e unit. Golubchuk's physicians felt that he was no qualitative futility? Do you agree? competent medical care, invite her patient to participate in a clinical trial? Clinical trials
ger self-aware and that his chances of meanin�ful form the foundation of contemporary scientific medicine in which novel treatments are tested
:overy were slim to none. Physicians were worried 2. What reasons does the family have for demand­
ing continued treatment? Do you think they are rigorously to ensure that they are safe and effective. Novel treatments, identified on the basis
1t continued treatment would cause him to suffer
good reasons? of theoretical considerations and animal testing, typically undergo testing in human beings in
edlessly. They further believed that such treatment
LS inconsistent with their duties as physicians. 3. Were the physicians right to try and unilaterally phase I, phase II, and phase Ill clinical trials before being adopted in clinical practice. In a phase
T he family demanded that intensive medical stop treatment? Was the family right to seek a I clinical trial, the treatment is administered to healthy volunteers to determine the dosage for
�asures to keep Golubchuk alive be continued. court injunction? subsequent testing and to assess any adverse effects. In a phase II clinical trial, the treatment
is given to a small group of patients to gather preliminary evidence of an effect on a particular
disease. If evidence from early phase clinical trials is sufficiently promising, the novel treatment
rther Reading may be compared with a treatment used in clinical practice in a phase Ill trial. In a phase III
randomized clinical trial (RCT), patients are allocated by chance to receive the novel treatment
1nadian Medical Association. Joint Statement on Moratti S. The development of "medical futility": or the standard treatment (or placebo) and are followed for a period of time to document the
Preventing and Resolving Ethical Conflicts lnv� lv!ng towards a procedural approach based on the role outcome. The results of phase Ill RCTs form the basis for applications to license new drugs and
Health Care Providers and Persons Receiving of the medical profession. J Med Ethics 2009; 35: provide evidence that may lead to changes in clinical practice. The articles in this chapter focus
Care [Internet). 1998. Available from: http://www. 369-72.
on the ethical challenges of RCTs.
cma.ca/index.php?ci_id=3217&Ia_id=1. Date Singer PA, Barker G, Bowman KW, Harrison C,
Accessed: 5 June 2012. The central moral challenge of the RCT emerges from a conflict between the goals of med­
Kernerman P, Kopelow J, Lazar N, Weijer C, ical practice and the goals of research. The doctor-patient relationship is widely regarded as a
:)Uncil on Ethical and Judicial Affairs, American Workman S for the University of Toronto Joint Centre
fiduciary relationship-a legally-recognized trust relationship-in which the physician has
Medical Association. Medical futility in end-of­ for Bioethics/Critical Care Medicine Program Task
life care. JAMA [In ternet). 1999; 281:937-41. Force. Hospital policy on appropriate use of life­ a moral duty to act and advise to promote the best medical interests of the patient. This duty
Available from: http://www.ama-assn.org/ama1/ sustaining treatment. Crit Care Med [lnternetl. of care obliges the physician to prescribe only treatment that is consistent with the medical
pub/upload/mm/code-medical-ethics/2037a.pdf. 2001; 29:187-91. Available from: http://www. standard of care (discussed in chapter 5). But how can the physician, consistent with her duty
Date Accessed: 5 June 2012. jointcentreforbioethics,ca/publications/documents/ of care to the patient, offer enrollment in an RC1? Allocating the patient to one or another
elft PR, Siegler M, Lantos J. The rise and fall of the ccm2001.pdf. Date Accessed: 5 June 2012. treatment randomly seems to run counter to the physician's duty to promote the patient's best
futility movement. N Eng J Med 2000; 343:293-6. medical interests. Further, all RCTs involve non-therapeutic procedures-be they additional
blood draws, an added X-ray. or a questionnaire-that expose patient-subjects to risk solely
for the scientific ends of the study.
In the first article, Benjamin Freedman examines the adequacy of "equipoise" as an solu­
tion to the RCT dilemma. According to the theory of "clinical equipoise," a physician may offer
RCT enrollment to her patient when she is genuinely uncertain of the preferred treatment.
Equipoise has been criticized in the literature on the grounds that it seems too fragile to
sustain or even initiate a clinical trial-the slightest accumulation of evidence in favour of
the new treatment will throw the physician out of equipoise. Freedman traces the difficulty
to an understanding of equipoise as requiring that the evidence supporting the treatments be
exactly balanced-a concept he calls "theoretical equipoise." Freedman believes theoretical
equipoise to be "both conceptually odd and ethically irrelevant." In its place, he proposes

,
Freedman: Equipoise and the Ethics of Clinical Research 95
CHAPTER 6 Equipoise and Clinical Research

uclinical equipoise,� according to which a physician may offer his patient enrollment in an M•UIW Equipoise and the Ethics of Clinical Research
RCT when there is a state of honest, professional disagreement in the community of expert Benjamin Freedman I New England Journal ofMedicine 1987; 317: 141-5.
practitioners as to the preferred treatment. Clinical equipoise is based on the recognition
that the physician's duty of care to the patient is essentially a social norm determined by the The Problems of Equipoise
community of expert practitioners. Thus understood, it is consistent with an imbalance in
There is widespread agreement that ethics requires of randomized clinical trials,5,6 it is important to
evidence where one treatment is favoured over the other so long as insufficient evidence has
that each clinical trial begin with an honest null recognize it as an ethical condition of all controlled
accumulated to settle the controversy in the medical community.
hypo thesis.1, 2 In clinical trials, whether
In the second article, Franklin Miller and Howard Brody argue that clinical equipoise
Clinical trial the simplest model, or not they are random­ r Randomized clinical trial
is based on a therapeutic misconception-that is, a conflation of the ethics of clinical An experiment involving healthy testing a new treat- ized, placebo-controlled, or A clinical trial in which patients
practice with the ethics of research. The goals of clinical practice and clinical research people or patients to test the safety ment B on a defined blinded.... are allocated by chance to the
differ: clinical practice aims to improve the health of the patient; clinical research aims to or efficacy of a medical treatment. J one of the various treatments
patient population P Many of the problems
produce knowledge that will benefit future patients. Miller and Brody claim that activities
with different ends cannot share the same moral rules. While physicians in clinical practice
for which the current raised by the requirement being tested in the study.
NLJII hypothesis Randomized clinical trials are
accepted treatment is for equipoise are familiar. generally thought to produce
are rightly viewed as owing a duty of care to their patients, it is a mistake to think that The supposition, at the start of 1 A, it is necessary that Shaw and Chalmers have the most reliable evidence of the
physician-investigators owe a duty of care to patient-subjects. Rather, the ethics of research
needs to be built anew on the recognition of the "frankly utilitarian purpose" of clinical
a study, that the experimental
treatment (in this case treatment the clinical investi- l
written that a clinician who efficacy of a new �t.
B) is no better than the comparator gator be in a state of "knows, or has good reason
research. According to their view, the physician-investigator has obligations not to exploit
treatment (or placebo; in this genuine uncertainty to believe," that one arm of the trial is superior may
patient-subjects unduly and to seek their informed consent for research participation. Miller
case treatment A). If a study finds regarding the com­ not ethically participate.7 But the reasoning or pre­
and Brody believe informed consent should emphasize that research is not another mode evidence that the new treatment
of therapy, but they recognize that this may dissuade some from participating in clinical parative merits of liminary results that prompt the trial (and that may
is superior to the comparator (or
research. lf need be, they suggest that recruitment rates for RCTs may be enhanced by offer- control) treatment, the null hypothesis J treatments A and B themselves be ethically mandatory)8 may jolt the
may be rejected. for population P. If a investigator (if not his or her colleagues) out of equi-
ing prospective subjects money to enroll in a study. While this may drive up the cost of
doing research, payment is a tangible way of underscoring to prospective patient-subjects _ physician knows that poise before the trial begins. Even if the investigator
that the research is not intended to be beneficial. these treatments are not equivalent, ethics requires is undecided between A and B in terms of gross meas-
ln the third article, Paul B. Miller and Charles Weijer disagree with Miller and Brody's that the superior treatment be recommended. ures such as mortality and morbidity, equipoise may
claim that activities with different ends cannot share moral rules and explore the implications Following Fried, I call this state of uncertainty about be disturbed because evident
of trust relationships for the ethics of clinical research. Trust relationships are relationships the relative merits of A and B "equipoise."3 differences in the quality of [ Morbidity
of inequality in which the weaker party entrusts control of significant practical interests to Equipoise is an ethically necessary condition in life (as in the case of two sur­ A dev1at on from a state of health
the more powerful party. The more powerful party assumes a variety of obligations to the all cases of clinical research. In tnals with several gical approaches) tip the bal­ caused by illness or injury.
weaker party, including a duty of care-that is, a duty to act and advise in such a way as to arms, equipoise must exist between all arms of the ance.9 12 ...
promote the significant practical interests of the weaker party. Some of the most important trial; otherwise the trial design should be modified late in the study-when p-values are between
relationships in our society are trust relationships-doctor-patient; lawyer-client; corporate to exclude the inferior treatment. If equipoise is dis­ 0.05 and 0.06-the moral issue of equipoise 1s most
executive-share holder-and all, despite the differing aims of the activities involved, involve a turbed during the course of a trial, the trial may need readily apparent ,13, 14 but
to be terminated and all subjects previously enrolled the same problem arises P-valLJe
duty of care. Miller and Weijer see two trust relationships at the heart of the ethics of research.

l
The first is a little-recognized trust relationship between the State and the research subject. (as well as other patients within the relevant popula­ when the earliest compara- A standard statistical measure
tion) may have to be offered the superior treatment. uve results are analyzed.IS of evidence in favour of the
The research ethics board (REB) is best understood as an arm of the State that ensures that the
liberty and welfare interests of research subjects are protected. In requiring that therapeuti> --- It has been rigorously
hypothes·s being tested in a
Within the closed statistical study.By convention, a p-value
procedures in research meet the clinical equipoise requirement, the REB ensures that the Placebo argued that a trial universe of the clinical trial, of less than 0.05 is considered
patient-subject's interest to receive competent medical care is protected. The second trust In a clinical trial with a no treatment w ith a placebo is each result that demonstrates 'statistically significant,' that
relationship is that between the physician-researcher and patient-subject. Knowing that a
comparator or control, a placebo is ethical only in inves a difference between the is, the po nt at which the null
study has been approved by a REB (and therefore, that a state of clinical equipoise exists),
a physiologically inert version of the ligating condit10ns arms of the trial contributes \ hypotheses
--- --
is reJected.
active treatment (e.g., a small blue
the physician-researcher fulfills the duty of care by ensuring that nothing in the particular for which there is no exactly as much to the statis-
tical conclusion that a differ­ Closed statistical universe
pill) that is administered to research
patient-subject's circumstances would require that she be excluded from the study. This is subjects in the control arm so that known treatment ; 4
An analysis of the study per se,

____ --
known as the «clinical judgment principle." they do not know whether they are this argument reflects ence exists as does any other. without appeal to conditions
receiving active treatment or not. a special application The contribution of the last outside of the study.
.. ---- ___,
of the requirement pair of cases in the trial is no
for equipoise. Although equipoise has commonly greater than that of the first. If, therefore, equipoise
been discussed in the special context of the ethics is a condition that reflects equivalent evidence for
96 CHAPTER 6 Equipoise and Clinical Research Freedman: Equipoise and the Ethics of Clinical Research

r
97

allernalive hypotheses, it is jeopardized by the first fundamental physiologic processes, and perhaps a any genuine difference exists. Prescott writes, for At this point, a state of "clinical equipoise" exists.
pair of cases as much as by the last. The investigator "gut feeling" or "instinct" resulting from (or superim­ example, "It will be common at some stage in most There is no consensus within the expert clinical com­
who is concerned about posed on) other considerations. The problems exam­ trials for the survival curves to show visually dif­ munity about the compara­
Alternative hypotheses the ethics of recruitment ined above arise from the principle that if theoretical ferent survivals," short of significance but "sufficient tive merits of the alternatives Clinical equipoi-
The supposition, at the start of after the penultimate pair equipoise is disturbed, the physician has ... a treat­ to raise ethical di� to be tested. We may state A state of uncertainty about
a study, that the experimental must logically be con­ ment preference-let us say, favouring experimental ficulties for the par­ the formal conditions under the relative merits of two (or
Survival curves
treatment is better than (or different treatment B. A trial testing A against B requires that A graphical plot of the proportion
from) the comparator treatment (or cerned after the first pair
of patients alive (y-axis) versus time ticipants."17 A visual which such a trial would be more) treatments being tested
placebo). The alternative hypothesis as well.... some patients be enrolled in violation of this treat· difference, however, characterized by honest,
(x-axis). ethical as follows: at the start professional disagreement
is contrasted with the null hypothesis. Finally, these issues ment preference . ..J is purely an artifact of of the trial, there must be a in the community of expert
are more than a philoso­ Theoretical equipoise is overwhelmingly fragile; the research methods employed: when and by what state of clinical equipoise practitioners as to the preferred
pher's nightmare. Considerable interest has been gen­ that is, it is disturbed by a slight accretion of evidence means data are assembled and analyzed and what regarding the merits of the treatment. Clinical equipoise does
erated by a paper in which Taylor et aJ.16 describe the favouring one arm of the trial. According to one view, scale is adopted for the graphic presentation of data. regimens to be tested, and not require that the evidence
termination of a trial of alter native treatments for equipoise is disturbed when the odds that A will Similarly, it is common for researchers to employ the trial must be designed regarding the two treatments
breast cancer. The trial foundered on the problem of be more successful than B are anything other than interval scales for phenomena that are recognized to be precisely balanced; nor
in such a way as to make it does it require that individual
patient recruitment, and the investigators trace much 50 per cent, it is therefore necessary to randomize be continuous by nature-e.g., five-point scales of reasonable to expect that, if practitioners be uncertain about
of the difficulty in enrol­ treatment assignments beginning with the very first pain or stages of tumour progression. These interval it is successfully concluded, the preferred treatment.
Trial of alternative treatments ling patients to the fact patient, lest equipoise be disturbed. We may say that scales, which represent an arbitrary distortion of the clinical equipoise will be dis-
for breast cancer that the investigators were theoretical equipoise is balanced on a knife's edge. available evidence to simplify research, may magnify turbed. In other words, the results of a successful
Freedman here refers to a very well­ not in a state of equipoise Theoretical equipoise is most appropriate to onc- the differences actually found, with a resulting dis­
known clinical trial called 'NSABP clinical trial should be convincing enough to resolve
regarding the arms of the di mensional hy potheses and causes us to think in turbance of theoretical equipoise. the dispute among clinicians.
s-06" conducted in the early 1980s those terms.The null hypothesis must be sufficiently
that compared the standard surgical trial. With the increase in Finally, . .. theoretical equipoise is personal A state of clinical equipoise is consistent with a
approach for breast cancer involving concern about the ethics simple and "clean" to be and idiosyncratic. It is disturbed when the clinician decided treatment preference on the part of the inves­
removal of the entire breast, with an of research and with the finely balanced; will A or r One•dimens�hypothesis has ... what might even be labelled a bias or a hunch,
experimental approach that combined increasing presence of I
B be superior in reducing A supposition regarding a preference of a merely intuitive nature.8 1 The inves­
tigators. They must simply recognize that their less­
favoured treatment is preferred by colleagues whom
breast-conserving surgery with this topic in the curricula mortality or shrinking the comparative merits of tigator who ignores such a hunch, by failing to advise they consider to be responsible and competent. Even
radiation therapy. At the time the two treatments that can be
of medical and graduate tumours or lower ing I expressed as a single, simple the patient that because of it the investigator prefers if the interim results favour the preference of the
clinical trial was enrolling patients,
many surgeons had already switched­ schools, instances of the fevers in population P? variable, such as tumour size or B to A or by recommending A (or a chance of ran­ investigators, treatment B, clinical equipoise persists
in advance of definitive evidence-to type that Taylor and her Clinical choice is com­ l blood pr� dom assignment to A) to the patient, has violated the as long as those results are too weak to influence the
the breast-conserving approach. colleagues describe are monly more complex. requirement for equipoise and its companion require­ judgment of the community of clinicians, because of
likely to become more The choice of A or B depends on some combination ment to recommend the best medical treatment. limited sample size, unresolved possibilities of side
common. The requirement for equipoise thus poses a of effectiveness, consistency, minimal or relievable The problems with theoretical equipoise should effects, or other factors. This judgment can neces­

ll practical threat to clinical research. side effects, and other factors. On close examination,
for example, 1t sometimes appears that even trials that
purport to test a single hypothesis in fact involve a
be evident. To understand the alternative, preferable
interpretation of equipoise, we need to recall the basic
sarily be made only by those who know the interim
results-whether a data-monitoring committee or

I
reason for conducting clinical trials: there is a current the investigators.
Theoretical Equipoise versus more complicated, portmanteau measure-1.g., or imminent conflict in the clinical community over At the point when the Data monitoring co-mmitt;e
Clinical Equipoise the "therapeutic index" of A versus B. The formu- what treatment is preferred for patients in a defined accumulated evidence in A group of experts, including
The problems of equipoise examined above arise from lation of the condit10ns ___ ___ population. The standard treatment is A, but some fa vour of B is so strong that physicians, a statistician, and
a particular understanding of that concept, which I of theoretical equipoise �manteau measure evidence suggests that B will be superior because of an
the committee or investigators accumulatingethicist, who review the
will term "theoretical equipoise." ll is an under­ for such complex, multi- IA ���bination of two or more
single, simple variables-a
its effectiveness or its reduction of undesirable side believe no open-minded clin­
data in a clinical
trial to protect the welfare of
standing that is both conceptually odd and ethically d i mensional di ni cal effects, or for some other reason. . . Or there is a ician informed of the results trial participants. A clinical trial
hypotheses is tanta­ compound variable, such as a
ir relevant. Theoretical split in the clinical community, with some clinicians
Theoretical equipoi____ I equipoise exists when,
A state of uncertainty about the relative overall, the evidence on
treatment's therapeutic index
mount to the for mulation (a measure of a treatment's favouring A and others favouring B. Each side recog­
would still favour A, clinical may be stopped early due to
equipoise has been disturbed. the proven superiority of one of
merits of two (or more) treatments
of a rigorous calculus of benefits minus its risks). nizes that the opposing side has evidence to support This may occur well short of the treatments, serious safety
behalf of two alternative apples and oranges. t....=.-=.:. -- --
its position, yet each still thinks that overall its own concerns, or a low probability of
being tested in which the evidence the original schedule for the achieving the trial's objectives.
supporting each is precisely balanced. treatment regimens is Theoretical equipoise is also highly sensitive to view is correct. There exists or, in the case of a novel termination of the trial, for
- --- --' exactly balanced. This the vagaries of the investigator's attention and per­ therapy, there may soon exist an honest, professional unexpected reasons. Therapeutic effects or side effects
evidence may be derived from a variety of sources, ception. Because of its fragility, theoretical equipoise disagreement among expert clinicians about the pre­ may be much stronger than anticipated, for example,
including data from the literature, uncontrolled is disturbed as soon as the investigator perceives a ferred treatment. A clinical trial is instituted with the or a definable subgroup within population P may be
experience, considerations of basic science and difference between the alternatives-whether or not aim of resolving this dispute. recognized for which the results demonstrably disturb
CHAPTER 6 Equipoise and Clinical Research
Freedman: Equipoise and the Ethics of Clinical Research
96
99

clinical equipoise. Because of the arbitrary character of of what is good medicine is the product of a profes­ research ethics; it does not so much change things as
human judgment and persuasion, some ethical prob­ sional consensus." By definition, in a state of clinical explain why they are the way they are. Nevertheless conditions and hypotheses of a trial in order to
lems regarding the termination of a trial will remain. equipoise, "good medicine" finds the choice between th� precision afforded by the theory of clinical equi� ensure the validity of its results. 24 This "fastidious"
Clinical equipoise will confine these problems to A and B indifferent. p01se does help to clarify or reformulate some aspects approach purchases scientific manageability at the
unusual or extreme cases, however, and will allow us In contrast to theoretical equipoise, clinical equi­ of research ethics; I will mention only two. expense of an inability to apply the results to the
to cast persistent problems in the proper terms. For poise is robust. The ethical difficulties at the beginning First, there is a recurrent debate about the ethical "me�s( conditions of clinical practice. The theory
example, in the face of a strong established trend, must and end of a tnal are therefore largely alleviated. There propriety of conducting clinical trials of discredaed o� clm1cal equipoise adds some strength to this criti­
we continue the trial because of others' blind fealty to remain difficulties about consent, but these too may treatments, such as Laetrile.23 Often, substantia cism. Overly "fastidious" trials, designed to resolve
l some theoretical question, fail to satisfy the second
an arbitrary statistical benchmark? be diminished. Instead of emphasizing the lack of evi political pressure to conduct such tests is brought
Clearly, clinical equipoise is a far weaker-and dence favouring one arm over another that is required ---- - ethical requirement of clinical research, since the
---.. to bear by adherents
more common-condition than theoretical equipoise. by theoretical equipoise, clinical equipoise places the special conditions of the trial will render it useless
A compound extracted from apricot of quack thera pies.
Laetrile
ls it ethical to conduct a trial on the basis of clinical emphasis on informmg the patient of the honest dis­ for influencing clinical decisions, even if it is suc­
pits that was purported to have I The the?ry of clinical cess£ully completed.
equipoise, when theoretical equipoise is disturbed? Or, agreement among expert clinicians. The fact that the _
anticancer effects. equ1 po1s e sugg ests
... is doing so a violation of the physician's obligation to investigator has a "treatment preference," if he or she The most important result of the concept of clin­
that when there is no . _ _
provide patients with the best medical treatment?l9-21 does, could be disclosed; mdeed, if the preference is s�p�ort for a treatment regimen within the expe ical equ1po1se, however, might be to relieve the cur­
- ---
----

rt
.J

Let us assume that the investigators have a decided pref­ a decided one, and based on somethmg more than a clinical community, the first ethical requirement of rent crisis of confidence in the ethics of clinical trials.
a Equipoise, properly understood, remains an ethical
erence for B but wish to conduct a trial on the grounds hunch, it could be ethically mandatory to disclose it. At trial-clinical equipoise-is lacking; it would there
that clinical (not theoretical) equipoise exists. The eth­ the same time, it would be emphasized that this prefer fore be unethical to conduct such a trial. condition for clinical trials. It is consistent with much
ics committee asks the investigators whether, if they or ence is not shared by others. It is likely to be a matter S e�ond Feins tein has critic ized the tendency current practice. Clinicians and philosophers alike
members of their families were within population P, of chance that the patient is being seen by a clinician _ have been premature in calling for desperate meas­
of chmcal inves
'.
tigators to narro w excessively the
they would not want to be treated with their preference, with a preference for B over A, rather than by an equally ures to resolve problems of equipoise.
B? An affirmative answer is often thought to be fatal competent clinician with the opposite preference.
to the prospects for such a trial, yet the investigators Clinical equipoise does not depend on concealing Study Questions
answer in the affirmative. Would a trial satisfying this relevant information from researchers and subjects,
weaker form of equipoise be ethical? as does the use of independent data-monitoring com
I believe that it clearly is ethical. As Fried has mittees. Rather, it allows investigators, in informing 1. What is th�o:etical equipoise? Why, according to 3. If a physician believes that one of the treatments
Freedman, 1s 1t a problematic concept for the ethics in
emphasized,22 competent (hence, ethical) medicine subjects, to distinguish appropriately among validated a clinical trial is superior, may she recommend trial
of clinical trials? participation to one of her patients? Why?
is social rather than individual in nature. Progress knowledge accepted by the clinical community, data
in medicine relies on progressive consensus within on treatments that are promising but are not (or, for 2. What is clinical equipoise? How does it avoid the
pitfalls of theoretical equipoise?
the medical and research communities. The ethics novel therapies, would not be) generally convincing,
of medical practice grants no ethical or normative and mere hunches. Should informed patients decline
meaning to a treatment preference, however power­ to participate because they have chosen a specific clin­
ful, that is based on a hunch or on anything less than ician and trust his or her judgment-over and above Notes
evidence publicly presented and convincing to the the consensus in the professional commumty-that is Levine RJ. Ethics and regulation of clinical research. 2nd
clinical community. Persons are licensed as phys­ no more than the patients' right. We do not conscript
ed 13 Khmt CR, Canner PL Terminating a long term clinica
Baltimore· Urban &: Schwarzenberg, 1986. l trial
icians after they demonstrate the acquisition of this patients to serve as subjects in clmical trials. ' 2 Clin Pharmacol Ther 1979; 25:641 6
Levine �- The use or placebos in randomized dmical trials.
14 Veatch RM. Longitudinal studies, sequential
professionally validated knowledge, not after they
IRB: Rev Hum Su!lj Res 1985; 7(2): 1-4. designs and
grant re�ewals: what to do with preliminary data
reveal a superior capacity for guessing. Normative
3. Fried C. Medical exper{mentalion: personal integrity and IRB: Rev
social Hum Subj Res 1979; 1(4). J-3.
poUcy. Amsterdam: North Holland Publishmg,
judgments of their behaviour-e.g., malpractice
The Implications of 4 Levine The use of placebos. 1965.
1974 15 Chalmers T The ethics or randomization as
a decision•
actions-rely on a comparison with what is done by
making techmque and the problem or informed
Clinical Equipoise 5, Marquis D. Leaving therapy to chance. Hastings Cent
Rep I�· B�aucha�p TL, Walters L, eds Contempora
consent.

the community of med- The theory of clinical equipoise has been formulated
1963; 13(4)·407. ry issues tn
b1oeth1cs Encmo, Calir., Dickenson. 1976·

' ical practitioners. Failure


426-9.
as an alternative to some current views on the ethics
6 Schafer A. The ethics or the randomized climcal trial N
Engl 16 Taylor KM Margolese RC, Soskolne CL Physic
J Med 1962; 307.719-24. ians' reasons
Legal proceedings undertaken in to follow a "treatment of human research. At the same time, it corresponds
Malpractice actions 7. Shaw LW, Chalmers TC. Ethics in cooperative cli01cal for not entering ehg1ble panents ma randomized clinica
l tnal
preference" not shared
trials
which one party claims that the actions closely to a preanalytic concept held by many in the
of surgery for breast cancer N Engl] Med 1984; 310.13
Ann NY Acad Sci 1970; 169:487-95. 63 7.
17 Prescott RJ Feedback of data to participants durmg
of a physician have been negligent, by this community and research and regulatory
8. Hollen berg NK, Dzau VJ, Williams GH Are uncontrolled clinical
trials In: Tagnon HJ, Staquet MJ, eds Controversies
illegal, or otherwise improper. not based on informa- communities. Clinical
clinical studies ever justified? N Engl] Med 1980; 303:1067. in cancer­
design of trials and treatment. New York:
9. Fried. Medical experimentation. 1974 Masson Publishing,
tion that would convince equipoise serves, then, as a An intuition; an idea that has not
Preanalytic concept
10 Marquis. Leaving therapy to chance. 1983. 1979:55 61

it could not be the basis for an allegation of legal or rational formulation of the I yet been exposed to r gorous
11. Schafer The ethics of the randomized cli01 cal trials 1970. 18 Scharer A The randomized climcal tnal: for whose
benefit?

approach of many toward rat,onal analysis.


/RB: Rev Hum Subj Res 1985, 7(2)-4-6
ethical malpractice, As Fried states: "IT]he conception
l2 Levine RJ, Lebacqz K. Some ethical consideratmns in clinica
l 19 Marquis, Leavmg therapy to chance 1983.
trials. Clin Pharmacol Thtr 1979; 25:728-41.
20 Schafer. The ethics of the randomized climcal
trials 1970
1()0 CHAPTER 6 Equipo se and Clinical Research Miller and Brody: A Cr tique of Clinical Equipoise 101

21 Schafer. The randomized clm1cal trial 1985. 24. Femstein AR. An additional basic science for clinical medi­ to learn about disease and its treatment in groups of requirement for independent, prospective review and
22. Fried.Medical exptrimentatwn. 1974. cine. II The limaations of randomized trials. Ann Intern Med patients, with the ultimate aim of improving med­ approval of research protocols.4 Prior independent
23. Cowan DH. The ethics of clinical trials or meffective therapy. 1983; 99:544-50.
ical care.Scientific interest in any particular pallent
/RB: Rev Hum Subj Res 1981; 3(5):10-1. review was considered necessary for clinical research r- I-'
concerns what can be learned that is applicable to because of the divergence between the interests of

MM•■
other patients. In view of the nature and purpose of the investigatoJ and th_e research participant. Self­
A Critique of Clinical Equipoise: Therapeutic Misconception in clinical research, the principles of beneficence and regulation by physician-investigators could not be
non-maleficence applicable to clinical research lack trusted in the research context to the same extent
the Ethics of Clinical Trials the therapeutic meaning that guides their applica­ that self-regulation by physicians was appropriate in
Franklin G. Miller and Howard Brody I Hastings Center Report 2003; 33{3): 19-28. tion to medical care. Clinical research is dedicated the therapeutic context. The basic rationale for pro­

1
primarily to promoting the medical good of future spective, independent research review depends on
Therapeutic Misconceptions patients by means of scientific knowledge derived the distinction between research and therapy....
... The prevailing ethical perspective on clinical trials medical research and medical treatment are tWQ..dis­ from experimentation with current research partici­
holds that physician-investigators can discharge their tinct forms of activity, governed by different ethical pants-a frankly utilitarian purpose.
-- Abandoning the Distinction

I
n
"therapeutic obli_gation to ·patients in the context of principles.... A major reason for distinguishing research from
therapy is to underscore that clinical research has

11-
randomized clinical trials (RCTs) as long as treatments The distinction between research and therapy is most
------_------ being !ested scientific- an inherent potential for exploiting research partici­ likely to be obfuscated in.the context of clinical trials,
Therapeutic obligation ally satisfy clinical equi-
The Distinction between Research pants.1 Exploitation also may occur in clmical medi­ which test the safety or efficacy of investigational
The physician's duty to act and to poise. We contend that and Therapy cine-venal physicians sometimes perform medically and standard treatments. Since patients may derive
advise the patient in accord with the unnecessary proced•
this ethical perspective Clinical medicine aims at providing..oplimal medical medical benefit from mal participation�pecially in
patient's best medical interests. Exploitation
---- -' is fundamentally flawed. care for individual patients. Ethically, it is governed by ures for the sake of phase III RCTs (the final stage of testing, which many
The unfair use of another person or profit, for example.
An ethical framework that provides normative guid­ the principles of therapeutic beneficence and thera­ her labour for one's own benefit or invt;_stigational drugs never even reach), clinical trials
ance about a practice should accurately characterize peutic non-maleficence. Therapeutic beneficence some other end. Just what counts­ Yet when physicians are often characterized as "therapeutic research."
the practice. The prevailing ethical perspective fails directs physicians to practice medicine with primary and what does not count-as an of integrity practice Nonetheless, the process of treatment in RCTs dif­
this test: All sound ethical thinking about clinical fidelity to promoting r instance
a.�-- of exploitation is contested. medicine, physicians' fer_s radically from routine clinical practice.5 Consider
research, and the regulatory framework for review the health of particular Therapeutic beneficence and patients' interests the contrast between the hypericum-sertraline trial
A physician's obligation to
of protocols for clinical investigation, depends on a patients. According to
promote his or her patient's Venal � converge. The pallent and routine medical care
basic distinction between research and therapy.But therapeutic non-ma l efi well-being. Susceptible to bribery; cor � desires to regain or for depression. If a phys­ Hypericum-sertraline trial
the claims in the prevailing ethical perspective on cence, the risks of medical maintain health or to ician treated 340 patients for A controversial clinical trial funded
Therapeutic non-maleficence
relieve suffering; the physician is dedicated to provid­ major depression, she would by the US National Institutes of
clinical trials conflate research and therapy. These care to which a patient is A physician's obligation not Health in which 340 patients
claims are that the ethics of the physician-patient exposed are to be justi­ to expose his patient to the ing the medical help that the patient needs. not decide which drug to with depression-a psychiatric
relationship must govern RCTs, that physicians who fied by the prospect of possibility of harm without the In clinical research, by contrast, the interests administer by flipping a disease for which there exists
conduct these tnals have a "therapeutic obligation n
compensating medical prospect of direct and counter· of investigators and patient volunteers are likely coin. If the physician elected proven, effective treatment-were
to patients enrolled in them, and that RCTs must be benefits for that pauent. l balanc,ng benefit to the pati� to �iverge, even when the investigator acts with to use sertraline, she would randomly assigned to receive
compatible with some form of equipoise .... The physician uses sci­ complete integrity. Patient volunteers, especially judge each case individually hypericum (St. John's Wort;
in clinical trials, typically seek therapeutic benefit, an herbal remedy), sertraline
The ther a p eut i c entific knowledge to care for the patient and engages to determine dose, when to (a standard treatment for
Therapeutic misconception misconcepti-on about in therapeutic experimentation with the airrf only of though they also may be motivated by altruism.2 change the dose, and whether depression), or placebo.
The mistaken belief said to be the ethics of clinical finding optimal treatment. It is nQt part of the role Investigators are interested primarily in developing to prescribe a second anti­
common among research subjects trials has emerged from of the physician in providing medical care to develop scientific knowledge about groups of patients. depressant or recommend other treatment. We would
that purely sc1e ntific elements of a
the "similarity position," scientific knowledge that can.help future patients. Regardless of investigators' motivations, patient expect to find considerable variation in the treatment
clinical trial are designed to benefit
the research sub1ect. For instance, which argues that ultim­ Clinical research, in volunteers are at risk of having their well-being administered to those 340 patients after eight weeks
a research subject who believes ately, the ethics of clinical contrast, is not a thera­ 'Generalizable knowledge compromised in the course of scientific investiga­ or so.From the vantage point of therapy, this is what

I
that randomization means that a trials rest on the same peutic activity devoted Reliable information that may be tion. Clinical research involves an inherent tension it means to provide care to patients.
computer p cks the best treatment used outside of the experimental between pursuing rigorous science and protecting
moral considerations to the personal care of context.Clinical trials are From the vantage point of research, such varia­
for her is suffering from a therapeutic research participants from harm.3
misconcept on. Here the authors that underlie the ethics patients. It is designed generally regarded as a source tion would wreak havoc on experimental design and
extend the scope of this term to of therapeutic medicine. for answering a scien of generalizable knowledge in Historically, the ethical distinction between the validity and generalizability of findings. So when
Inc ude the belief common amongst The udifference position'' tific question, with the that information on the safety and research and therapy emerged out of concern about patients are randomized to one or another experi­
ethicists that medical research and argues that the ethics of aim of producing �gen­ efficacy of a treatment 1n a trial exploitive abuses of patients in clinical research. mental drug, and are treated according to relatively
medica practice share at least some reliably informs the treatment of Reflection on this dark history gave rise to a major
clinical trials must start eralizable knowledge.n similar patients in medical practice. inflexible protocols, the activity is very different from
common ethical principles. development in the ethics of clinical research: the
with the realization that The investigator seeks l therapeutic medicine.
MIiier and Brody: A Critique of Clinical Equipoise 1 03
102 CHAPTER 6 Equipoise and Clinical Research

of th:_ investigators, forming one horn of the RCT dilemma, has the interests of future patients at heart, and so can­
of must be indifferent to the therapeutic value
l n man y othe r ways, too, rout ine aspe cts ated in tTie constitutes a ther�peutic miscon�tion abou_t th�_e_!h­ not decide for the subject whether or not to participate
by the - experimental andconttol treatments eval�
research deviate from what would be required of equip oise had prev1 0usly been ics of clinical trials. The presumption.that RCTs must in the research. To be trustworthy, investigators must
malefi­ trial.The basic idea
duties of therapeutic beneficence and non- Hill, a pione er in the devel op­ be compatible with the ethics of the physician-patient themselves understand clearly the ways in which clin­
stigators articulated by Bradford
cence. Volunteer patients and physician inve objec ted to prim arily relationship assumes erroneously that the RCT is a form ical research differs from clinical practice and convey
tal ment of RCTs.9 But what Fried
are often ignorant of assignment to the experime� but the fact of therapy, thus inappropriately applying the pnnciples this forthrightly to potential research subjects.
Trials in RCTs was not randomization per se,
or control treatment, which may be a placebo. obtained. Fried of therag�utic beneficence and �on-maleficence that It is worth pondering, however, the practical con­
draws, that no informed consent had been
of ten include interventions such as blood ad of "care govern clinical medicine to the fundamentally d1f­ sequences that might ensue if physicians, investigators,
sies saw the threat of "care for groups" (inste
lumbar punctures, radiation imaging, or biop in the idea that ferent_practice of clinical research. It is impossible to patients, and ethicists understood clinical trials with­
benefit for individuals") as residing primarily
that measure trial outcomes but in no way an RCT with­ maintain fidelity to doing what is best medically for out distortion by therapeutic misconceptions. Would
ho t" it was legitimate to enroll subjects in
participants. RCTs often contain a �rug "was � conse nt becau se the results of patients in the context of RCTs bi;cause_t_hese are not recruitment of participants for valuable clinical trials
t g out explicit, informed
phase before randomization to av01d confound � medi cal know ledge that designed for, and may conflict-wit-hr.personalized care. become substantially more difficult, slowing progress
t wtth the trial would provide new
the evaluation of the investigational treatmen e patie nts. 10 Because Although ethically appealing, the project of bridging m medical care? The fact that clinical trials are no
ving would improve the lot of futur
the effects of medication that patients were recei med consent, the gap between therapy and research via the doctrine longer seen as a mode of therapy leaves unchanged the
earch Fried was concerned chiefly about in{Q.r
prior to the trial. These various features of re� rch and of clinical equipoise is doomed to fail. ... real prospect of therapeutic benefits offered to patients
to an essential ingredient of both medical resea
design promote scientific validity; they carry nsk� aprh'._!ng By conflating the ethics of clinical trials with the from trial participation, including the opportunity to
tmg therapeutic medicins_he saw no pro_!'Jemin
participants without the prospect of compensa •• ethics of therapeutic medicine, proponents of the receive promising investigational agents, ancillary
the ethics of medical therapy to medical research.
therapeutic benefit.... similarity position may also contnbute to the lack of medical care, expert diagnostic evaluations, and edu­
Once one understands the distinction between adequate informed consent. If investigators view the cation about their disorder. Nonetheless, some patients
research and therapy, one realizes that "therapeu
tic"
The Emergence of Clinical Equipoise ethics of clinical trials through a therapeutic lens, they might be less inclined to participate in clinical trials
resea rch, and that the ethic al rules
research is still
te for clini al The similarity position and clinical equipoise have may explicitly or implicitly foster the therapeutic mis­ when they appreciate the differences between these
appr opriate to it are those appr opria � among bioethicists, but �lso conception among research participants-that is, the scientific experiments and medical care.
e been popular not only
research generally.Even though the patient may den� rs. We speculate that this ethical tendency of par.!.!_cipants in trials to confuse clinical To attract enough subjects, researchers might have
basic among investigato
benefit from the treatment being evaluated, the to address investigators' psycho­ trials with medical care.Research participants need to to pay people for their participation, as researchers
rather perspective helps
goal of the activity is not personal thera?y, ?ut ician-investigators, after all, went know that the overall activity is aimed not at their own in industry-sponsored clinical trials already do with
n of gener ally applicable scien ufic know ­ logical needs. Phys of
the acqu isitio
the activ ity deter ­ to medical school, not investigator school.To thmk ultimate_ benefit, but at discovering new knowledge to increasing frequency. Payments would add to the cost of
ledge. The basic goal and nature of al fram ewor k help future patients. If they think that clinical trial conducting clinical trials, but it might help prevent the
ough t to apply ... research with patients outside the ethic
ethical stand ards that rence parti�tion is a form of therapy, then they cannot therapeutic misconception among trial participants. 11
mines the of the physician-patient relationship, as the diffe_
to
position requires, may be difficult and threatemng give informed consent. Moreover, unlike the thera- 1 To be paid signifies that the trial participant is not
s
Charles Fried and the them. Clinical equipoise offers a formula that seem peutic context, the patient-subject cannot delegate the merely a patient seeking therapy. If additional expendi­
both phys ician and inves tigato r decision to the physician-researcher.In the therapeutic ture is necessary to motivate clinical trial participation,
Similarity Position to allow them to mix
cal comfo rt is purch ased setting, a patient can decide to trust the physician to then this is a price worth paying for enhanced profes­
on: roles-even if the psychologi
In 1974, Fried published Medical Experimentati choose the best treatment because the physician has' sional integrity and informed consent....
the at the price of ethical obfuscation....
Personal Integrity and Social Policy, which launched the patient's best interests at heart. The investigator
6 ed
similarm,: position within bio��- Fried assum
Critique of the Similarity Position
mas m resea rch woul d
that answers to ethical dilem
s of thera peut ic
have to be found with in the ethic ipoise
the and Clinical Equ Study Questions
medicine. He defended fidelity to the inter:_sts of
i­ We contend that clinical equipoise is fundamentally
individual patient against a model in which "med it
7 t mistaken because "the RL T dilemma," for which
cine is to be viewed as caring for populations." Wha cal equip oise
1. How, according to Miller and Brody, does clinical 3. How might clinical equipoise impede valid informed
to was proposed as a solution, is false.Clini equipoise "conflate research and therapy"? consent? Will Miller and Brody's proposal of paying
made the RCT ethically suspect was that it seemed ----
r and all other forms of ,- -- -- -- research subjects promote valid informed consent?
him a prime example of population-focused-rathe 1 RCT dilem ma 2. What is the difference between research and ther­
equipoise make sen�e as The question that Freedman tool<.
than indiv idualized-and utilitarian medicine. apy? What does this imply for the ethics of research?
a normative requirement \ himself to be addressing: How
Fried devo ted most of his book to defending
8 ed­ for cl inic al trials only can the physician, consistent
patients' "rights in personal care.� Return�ng to �
ts on the assumption that I with his duties to the patient,
ical research, he took issue with tnals m which patien ipation 1n a
investigators have a thera- offer the patient partic trial in which Notes
were randomized to receive either the experimental rando mized contr olled 1. E.J. Emanuel. D.Wendler, and C. Grady, "What Makes
peutic obligation to the ] 2 J. Sugarman, N.E Kass, S.N Goodman, P. Perentesis, P.
intervention or standard care. Fried coined the term the treatment the patient received Clinical Research Ethical?" JAMA 283 (2000):2701-11. Fernandes, and R.R.Faden, "What Patients Say About Medical
descr ibe the ethic alJy neces sary cond i­ research participants.The will be determined by chance?
"equipoise" to _ -- - Research." !RB 20, no. 4 (1998).1-7.
"therapeutic obligation of L.: __ __ --
»
tion for conducting an RCT: physician-invesugators
M Iler and Wei,er: Trust-based Obligations of the State and Physician-Researchers to Patient-Subjects
CHAPTER 6 Equipoise and Clinical Research
1011
104

3. FG. Miller, D.L.Rosenstein, and E.G. DeRenzo, "Professional 7. Ibid., 5


---National regulations and
research to ensure and, as such, particular patient-subjects and their
Integrity in Clinical Research," JAMA 280 (1998):1449-54. 8. Ibid., 94. its compliance with particular interests are not yet in view. Rather, REB
9. A.B.Hill, "Medical ethics and controlled trials," British Medical
g uidelines
4. R.R.Faden and T.L.Bcauchamp. A History and Theory of Most countries have national national standards. review is aimed at protecting the a gen t-neutra 1
Informed Consent (New York: Oxford University Press, Journal 1 (1963):1043-9.
statements setting out ethical The REB, therefore, is interests of patient-subjects. It ensures that patient­
1986):200-2. 10. C.Fried. Medical Experimentation: Personal Integrity and Social standards for human subjects
Policy (New York: American Elsevier, 1974): 8. best understood as an subjects are not exposed needlessly to the risks of a
5. J.W. Berg, P.S. Appelbaum, C.W.Li dz, and LS. Parker, research. National regulations and
Informed Consent: Legal Theory and Cltnical Practice, 2nd edi­ 11. N. Dickert and C. Grady, "What's the Price of a Research arm of the state that study that cannot answer the
Subject? Approaches to Payment for Research Participa11on• guidelines vary in terms of legal force
tion (New York: Oxford University Press, 2001):280-3. and content from one country to the ensures protection of scientific question posed, or
New England Journal of Medicine 341 (1999): 198-203.
Agent-neutral interests
6. C. Fried, Medical Experimentation: Personal Integrity and Social next. Canada's Tri-Council Policy the liberty and wel­ one that deals with a trivial The morally relevant concerns of
Policy (New York: American Elsevier, 1974). people as members of a group or
Statement is a set of guidelines for fare of citizens who question. It checks proced­
research ethics boards that does population of similar individuals in
give of themselves ures for patient-subject selec­ a research study, as distinguished
not have the force of law; the US' to further medical tion, but does not check that
Common Rule, on the other hand, from their concerns as individuals.
li#lil=l=I Trust-based Obligations of the State and sets out legally binding standards.
knowledge. each enrolled patient-subject An assessment of agent-neutral
Physician-Researchers to Patient-Subjects -- Clinical research
is reviewed prospect­
is in fact eligible for study
participation. It assesses the
interests requires knowledge
of only group characteristics,
Paul B. Miller and Charles Weijer I Journal ofMedical Ethics 2006; 32: 542-7. such as the disease under study,
ively by the REB. Before potential patient-subjects benefits and harms of the
and does not require specific
To consider these questions and the broader dilemma may be approached regarding study participation, study in the light of existing knowledge of the individual
... The solution given by Miller and Brody (pp. 100-3 in
satisfactorily, in our view, requires recognition and an REB review ensures that protocols meet general data on the treatments and including her particular medical
this collection) is unsatisfactory. It has been noted that
elucidation of the independent obligations of the state ethical and scientific standards.2 In carrying out characteristics of the study history and circumstances.
an implausible form of moral dissociation is required,
and the physician-researcher to protect the interests this prospective review, REBs scrutinize several key population, not in light of
whereby doctors engaging in research must willfully
of patient-subjects. These obligations are under­ aspects of the research protocol. The study must be the medical history of particular patient-subjects. The
ignore the professional
stood to be derived from the trust-based relationship scientifically valid-that is, the methods must be REB scrutinizes consent procedures and documents,
obligations they have
between the patient-subject and the state and the appropriate to answer the study question. The study not processes of obtaining informed consent from
physicians.1 Further,
Moral disSO<:iation
A separation of normally related as
physician-researcher, respectively. question posed must be of sufficient value to science particular patient-subjects. It requires that adequate
roles and obligations; in this case, the assertion that activ­
and society to justify non-therapeutic risks to patient­ procedures are in place for protecting the privacy and
a person who is both a physician ities themselves generate
and an investigator who ignores her subjects. Procedures to enroll patient-subjects in the confidentiality of the personal information of patient­
norms is counterintuitive
professional obligations as a physician Obligations of the State --- "' study must be fair subjects, but does not supervise the handling of infor­
and requires argument.
to a patient-subject. In psychiatry, Clinical research is the source of a critical public I and neither exclude mation of particular patient-subjects.
Non-therapeutic risks
moral dissociation is a precursor to Finally, the additional Potential physical, psychological,
benefit: it aims to place medical practice on a foun­ those who may bene­ Of all of the norms used by the REB in protecting
multiple personality disorder. assertion that the norms social or economic harms associated
-- -- -- -- governing activities with dation of scientific evidence. Without the voluntary with procedures in a study that fit from participation the agent-neutral interests of patient-subjects, the
participation of patient-subjects, clinical research are administered solely to answer nor enroll those who least understood are the substantive and procedural
differing ends are non-overlapping is obviously false. the scientific question at hand and may be unduly sus­ norms through which REBs ensure that benefits and
cannot proceed and the public will be deprived of
Norms prohibiting fraud and murder are universal and that do not hold out a reasonable ceptible to harm. The harms of study participation stand in reasonable rela­
an important good. Patient-subjects reasonably trust
thus apply across diverse activities. Worse still, Miller prospect of direct benefit for the benefits and harms of tion. Existing regulatory norms relating to the evalu­
that the state will protect them in exchange for their
and Brody's view is internally inconsistent on this very research subject.
study participation for ation of research benefits and harms are typically
contribution to the public good of science. As a result
point. They recognize a duty to obtain informed con­ patient-subjects must vague and disconnected. Interpretations of key con­
of the trust shown by patient-subjects, and the pub­
sent applicable to clinical practice and clinical research. stand in reasonable relation. Adequate procedures cepts vary widely.3 REBs are thus left to make intui­
lic benefit derived from their partic1pat1on in clin­
Thus, at least one norm in their schema is overlapping, must be in place to secure valid informed consent. tive assessments on the acceptability of benefits and
ical research, the state is morally obliged to exercise
refuting a central premise of their argument. Finally, sufficient safeguards must be in place to pro­ harms of the research, contributing to inconsistent
its powers to protect their interests. The state fulfils
Given this, we think physician-researchers will tect the confidentiality of private health information. decision-making processes and results. Elsewhere,
its trust-based obliga tion to protect the interests of
rightly continue to wonder about the implications of � -- ·---- --- In making judg- we have worked to remedy this problem by provid­
patient-subjects through promulgating regulations
their duty of care to patient-subjects when conducting ments pertaining to ing a structured set of norms and procedures for
with adequate substan- __ __ Agent-relative interests
clinical research. When, consistent with this obliga- The morally relevant concerns of liberty and welfare, benefit-harm evaluation by
-- -- - tion, can a physician offer tive and procedural safe­ Trust-based obligation
people as individuals in a research the REB does not the REB.... !component analysis
Research ethics board a patient enrolment in an guards for subjects and
l
A moral duty that stems from a study, as distinguished from their I A systematic and comprehensive
A committee comprising health by ensuring adequate trust relationship. concerns as members of a group or take into account We h ave named our approach to the ethical analysis
RCr? ls approval by the
professionals, researchers, an enforcement of these population of similar individuals. An the agent-rela tive approach component analy­ of benefits and harms in
ethicist, a lawyer, and one or more resea rch e thics board
regulations. National regulations and guidelines assessment of agent-relative interests interests of patient­ slo,, for it rests on the insight clinical research that involves
community represent atives that (REB) sufficient? ls there requires specific knowledge of the the separate consideration of
define standards for scient1fic and ethical acceptabil­ subjects. Review of that clinical research often
provide local peer review of the a role for clinical judg- indi�dual including his or her particul r therapeutic and non-therapeutic
ethical acceptability of human ity of clinical research. REBs and national oversight clinical research by contains a mixture of study
ment when doctors act medical history and circumstances. :J
subjects researc�rotoco� -- J as physician-researchers? authorities provide an arms-length review of clinical -- REBs is prospective 4
procedures. Some procedures
procedures in a study.
101 CHAPTER 6 Equipoise and Clinical Research Miller and Weijer: Trust-based Obligations of the State and Physician-Researchers to Patient-Subjects 107

in clinical trials are administered with therapeutic contingent only on satisfaction of standards applicable the acceptability of benefits and harms in research. It between a physician and a patient. The central norma­
warrant ("therapeutic procedures"), whereas others to non-therapeutic procedures. thereby offers the prospect of improving the quality and tive importance of trust to the relationship has been
in the absence of therapeutic warrant are administered Therapeutic procedures must satisfy the clinical consistency of REB review, enabling REBs to better meet recognized by physicians and protected by fiduciary
purely to answer the sci­ equipoise requirement.5 That is, to approve random­ the trust patient-subjects repose in the state. However, law for several important reasons. First and foremost,
Therapeutic warrant entific question at hand ization of subjects to the therapeutic procedures to it is important that we realize the limitations of REB the physician-patient relationship is rooted in the
Evidence that makes it reasonable to ("non-therapeutic pro­ be studied in the trial, the REB must find that there approval. As with its enforcement of other norms, so frailty of the human condition. People are vulnerable
believe that a procedure is likely to cedures"). The distinction is a state of honest, professional disagreement in the in its enforcement of the norms related to benefits and to sickness and disease, and are often made vulner­
directly benefit a research subject. in terms of the presence community of expert practitioners as to the preferred harms in component analysis, REB approval signifies able by illness when entering into relationships with
Therapeutic procedure of therapeutic warrant is treatment.The prospective and general nature of REB only that a protocol meets general standards man­ physicians. Furthermore, the state vests exclusively in
A study intervention administered morally relevant. Only review, combined with the inherently social nature dated by the state. The scope of REB review is limited physicians the authority to receive, diagnose and treat
on the basis of therapeutic warrant. procedures administered of the establishment of treatment standards, make to protection of the agent-neutral interests of patient­ patients. By virtue of this grant of exclusive profes­
Therapeutic procedures in research
may involve pharmacological, surgical, with therapeutic warrant it appropriate for the REB to evaluate therapeutic subjects, and hence the moral and legal significance sional license, coupled with disparities in knowledge
or psychological interventions. J can reasonably be said to procedures in the light of the state of community of REB approval is circumscribed. REB approval does and power, patients must depend on physicians for
advance the welfare inter­ opinion on the comparative merits of available treat­ not entail the moral or legal acceptability of enrolling the beneficial exercise of clinical judgment in main­
Non-therapeutic procedure
A study intervention administered
1 ests of patient-subjects in
receiving treatment. The
ments. In ensuring that the expert community is at
odds regarding the comparative merits of treatments
particular patient-subjects in research, nor does it email taining and improving their health.
the acceptability of their continued participation in the Coming to a relationship often prefigured by
solely to answer the scientific benefits and harms asso­ available to patient-subjects, the REB ensures that they study, as these acts engage the agent-relative interests circumstantial inequality of power and depend­
question at hand and not on the basis ciated with therapeutic will not be asked to accept substandard treatment to of patient-subjects. It is the physician-researcher who ence, patients are doubly vulnerable on account of
of therapeutic warrant. procedures may there­ participate in clinical research. Procedurally, to make retains the independent moral and legal obligation to the structural inequality of power and dependence
fore be justified through this determination, the REB does not survey practi­ protect the agent-relative interests of the patient-subject generated by the very act of entrusting power over
a comparative assessment of the benefits and harms tioners. Rather, it scrutinizes the justification for the in clinical research. one person's interests to another-namely, the phys­
of available treatments. Non-therapeutic procedures study, the relevant literature and, where needed, the ician. Circumstantial and structural inequality of
cannot reasonably be said to advance the welfare inter­ opinion of impartial clinical experts. Therapeutic power and dependence give rise to a heightened vul­
procedures are acceptable when the REB judges that,
Obligations of the
ests of patient-subjects.The risks associated with non­ nerability to exploitation on the part of the patient­
therapeutic procedures must therefore be justified by were the evidence supporting the various therapeutic Physician-Researcher
subject. In short, in entrusting power to physicians,
standards that weigh the welfare interests of patient­ procedures widely known, expert clinicians would Miller and Brody deny that the physician-researcher
patients necessarily face the risk that this power will
subjects in protection from harms of research against disagree as to the preferred treatment. is bound.by a duty of care to protect the agent-rela­
be misused to their detriment by physicians in pur­
the interests of the public and others in the benefits As non-therapeutic procedures are not admin­ tive welfare interests of the patient-subject in clinical
suit of their own interests or those of others. Precisely
of research. The moral condition imposed on the use istered with therapeutic warrant, differing moral research.Their position is without persuasive moral
because of the vulnerability that prefigures and is
of therapeutic procedures is intended to protect their standards apply to their evaluation. In general, risks or legal foundation. Their account of the obligations of
generated by it, the relationship between a physician
welfare interests in receiving competent medical treat­ associated with non-therapeutic procedures must be the physician -researcher to the patient-subject has the
and a patient is closely monitored and policed by the
ment. By contrast, moral conditions imposed on the use minimized, consistent with sound scientific design, and hallmarks of contractualism. Most notable is the over­
profession and the state.
of non-therapeutic procedures are intended to secure must be reasonable in relation to the knowledge to be riding emphasis on informed consent and the nega-
The trust model is the appropriate one for the
their welfare interests in protection from unreasonable gained.... Procedurally, the REB ensures that all pro­ tive obligation to avoid relationship between physician-researcher and
risks solely in the interests of others. posed procedures are actually required to meet the sci­
Contractualism l exploitation.Although
A moral view that defines what patient-subject. The relationship bears all the hall­
On the basis of this distinction, component analy­ entific ends of the study. At times, non-therapeutic risks peop1e owe one another based on the the norms of contrac­ marks of a trust relationship. The patient-subject
sis provides separate substantive moral standards for may be minimized by piggybacking on routine clinical agreements reached between them. tual relationships have cannot reasonably be expected to act as a shrewd,
REB evaluation of the benefits and harms of therapeutic procedures-for example, extra blood for research pur­ - --- --- J an essential role in the
independent party to a contract, enjoying an arms­
and non-therapeutic procedures.... When protocols poses may be taken at the time of a clinically indicated social and economic order, they are unsuited to the rela­
length relationship with the physician-researcher in
provide for both therapeutic and non-therapeutic blood draw, thereby saving the patient-subJect an addi­ tionship between a physician-researcher and patient­
which both fend for their own interests. Many patients
procedures, an REB may deem that a study poses an tional vencpuncture. Whether non-therapeutic risks subject. We leave open the question of whether the
considering participation in research continue to
acceptable balance of benefits and harms only if both are reasonable in relation to the knowledge to be gained contractual model is be made vulnerable by illness. They usually agree
---- - - - sets of moral standards requires a judgment that ..- Ju,af l an appropriate one for
Phase I drug trials A relationship of structural inequality to participate in research hoping thereby to receive
are fulfilled. Obviously, draws on both scientific Venepuncture In which the more powerful party relationships between improved treatment. Through consent, the physician­
Early studies of a new drug in human Piercmg a vein, usually in the
beings that seek to establish, among when protocols provide expertise on the REB and (e.g., the physician or physician­ healthy participants researcher is authorized to exercise most if not all
arm, with a needle and syringe
other things, a safe dose at which the only for non-therapeutic the opinion of commun- to withdraw blood for testing. researcher) is given control over and researchers. of the discretionary powers enjoyed by the'physician:
drug may be administered in further procedures (e.g., interview ity representatives on the significant practical interests of the It has long been including powers of diagnosis and treatment. Similar
studies. Phase I drug studies often studies or phase I drug social value of the scientific ends pursued. ... less powerful party (e.g., the patient recognized that I rust to other trust relationships, the relationship between
involve healthy volunteers rather than or patient-subject), engendering
trials in healthy people), Component analysis provides REBs with a com­ forms the foundation physician-research and patient-subject is cparacter­
patients as research subjects. dependence and vulnerability.
this determination is prehensive and systematic framework for evaluating ____,! of the relationship ized by circumstantial and structural inequality of
CHAPTER 6 Equipoise and Clinical Research
CHAPTER 6 End of Chapter Reso..irces 109

power and dependence relating to authorization of review and approval of RCTs by REBs, this specifica­ welfare mterests of the patient-subject. Clinical equi­ between judgments made by the REB and physician­
the exercise of power. By virtue of their illness and tion should also be temporally situated. poise does not leave room for suchjudgment. Secondly, researcher. Thirdly, it provides a reasonable epistemic
their desire to overcome it, patient-subjects authorize The physician-researcher may approach a patient it situates the exercise of clinical judgment temporally, basis for physician-researcher judgment, avoiding the
physician-researchers to exercise discretionary pow­ for enrollment in an RCT only after REB approval is __ ___ recog nizing that the undue restrictiveness of clinical equipoise (i.e., only
ers, and trust and rely on them to do so in their inter­ obtained. As such, when it is based on appropriate Uncertainty principle physician-researcher RCT results count as evidence) and the undue laxity
ests to the greatest extent possible given the inherent implementation of component analysis, REB approval A moral reqU1rement according to may not appro ach
which a phys cian must be genuinely of the uncertainty principle (i.e., anything counts as
demands of research design. provides the physician-researcher with a reasonable a patient for enrol-
uncertain as to the preferred evidence). The clmical judgment principle allows judg­
If the relationship between a physician-researcher basis for believing that the enrolment of patients in ment in an RCT until
treatment for a particular patient ments to be based on many sources of evidence, includ ­
and a patient-subject is properly theorized as one of the RCT is provisionally consistent with their duty of before she may offer RCT enrollment after the study has ing the physician's experience, the patient-subject's
trust, what obligations accrue thereby to the physician­ care to the patients. This is because clinical equipoise to the patient. Any treatment been approved by an history or novel findings in the literature, provided
researcher? We suggest that trust relationships of this protects the agent-neutral welfare interests of patient­ preference-even one based on REB. The uncer tainty that such evidence ought to be deemed convincing
kind-that is, in which one party entrusts another subjects in receiving competent care. Nevertheless, the anecdotal information or a hunch-is pri nci pie does not
thought, according to this view, to by colleagues.Finally, the clinical judgment principle
with power over significant practical interests-give use of clinical judgment by the physician-researcher speak to REB approval
make trial enrollment unethical. specifies a duty of care that is, in turn, firmly rooted
rise to a range of obligations reflecting the structure of is essential to ensuring that the agent-relative wel­ ___J or the relatio nship in the moral and legal theory of trust relationships....
the relationship. They include a duty of loyalty and a fare interests of the patient-subject are protected.
duty of care. We do not explore all trust-based obliga­ Accordingly, to satisfy their duty of care to the patient­
tions presently, as we are subjects, the conduct of the physician-researchers is
Duty of loyalty here interested only in the subject to what we call the clinical judgment prin­
Moral obligation of the physician­ manner in which one of ciplt'. Under the clinical judgment principle, know­ Study Questions
researcher to be faithful in protecting
the interests of the patient-subject. them-the duty of care­ ing that an RCT has been
is to be specified in con­ approved by an REB Clinical judgment principle 1. What is a research ethics board? How does it func­
sideration of a particular under component analy­ A specification of a physician­ tion to protect research subjects? 3. What is the trust-model used by Miller and Weijer?
Duty of care researcher's duty of care according How does it operate at the level of the state and the
trus t relat ionship­ sis, the physician may to which the physician-researcher, 2. What is the clinical judgment principle? How does
Moral obligation of the physician­ physician-researcher?
researcher to act and to advise in namely, that between offer patients enrolment knowing that an RCT was reviewed it function to protect research subjects?
accord with the patient-subject's best physician-researcher and in a trial unless (1) they by an REB using component
medical interests. patient-subject. believe that it would be analysis, may offer a patient
Th e specification medically irresponsible to enrollment in a study unless he
believes that doing so is medically
of the duty of care will vary among relationships do so, and (2) this belief irresponsible and this belief is
depending on the scope of power wielded by the is supported by evidence supported by evidence that ought Notes
stronger party and how the interests of the weaker that ought to be convin­ to be convincing to colleagues. 1. Lemmens T, Miller PB. Avoiding a Jekyll-and-Hyde approach
10 the ethics of clinical research and practice. Am J Bioethics 4. Weijer C, Miller PB. When are research risks reasonable in
party are defined. Patient-subjects in clinical research cing to colleagues. 2002;2·14-17. relation to anticipated benefits? Nat Med 2004;10:570-3.
by definition are ill and have an interest in receiving Physician-researchers meet their duty of care 2. Emanuel EJ, Wendler D. Grady C. What makes clinical 5. Freedman B. Equipoise and the ethics of climcal research. N
competent medical care. Physician-researchers by Engl] Med 1987;317:141-5.
through making expert judgments, taking account research ethical? JAMA 2000;283:2701-11.
virtue of their professional license have the power of evidence on treatment alternatives and the cir­ 3. Shah S, Whittle A, Wilfond B, et al. How do mstilutional
review boards apply the federal risk and benefit standards
to provide such care. The duty of care under which cumstances of the patient-subJect. In fulfilling the for pediatric research? JAMA 2004;291:476-82
physician-researchers operate may thus be specified duty, the physician-researcher will decline to offer
as follows. The physician-researcher is trusted to enrolment to a patient who meets eligibility criteria,
exercise clinical judgment in protecting the medical but whose medical history suggests that participation
interests of the patient-subject and has an obligation may be unduly harmful. The physician-researcher
to act in a manner that meets this trust. must also recommend that a patient-subject withdraw
This simple statement of the duty of care belies from an RCT regardless of protocol requirements in
considerable difficulty and disagreement over its pre­ the case of an unexpected adverse event that would,
cise specification. Just how are physician-researchers in clinical practice, require cessation of treatment or
Chapter Study Questions
to meet their obligation to exercise judgment in the adoption of an alternate course of treatment. 1, Miller and Brody claim that Freedman's view is
interests of patient-subjects, given the restrictions The clinical judgment principle has at least four view is grounded in a trust model. Describe and
based on a therapeutic misconception. What critically assess each view.
trial design places on treatment? . .. A novel specifi­ advantages over previous specifications of the phys­ do they mean by this and how might Freedman
cation of the physician-researcher's duty of care to the ician-researcher's duty of care. Firstly, it recognizes respond? 3. Miller and Weijer do not believe that Freedman
patient-subject is required that keeps the individual and defines the place for the clinical judgment of the solved the "RCT dilemma." Are they right?
2. Miller and Brody's view can be understood as
patient-subject in view. Given the requirement for physician-researcher in protecting the agent-relative rooted in contract, while Miller and Weijer's "

..-
7
110 CHAPTER 6 Equipoise and Clinical Research

Consider the following from the article by Miller and not personal therapy, but rather the acquisition
Brody: of generally applicable scientific knowledge. The
basic goal and nature of the activity determines
"Once one understands the distinction between
the ethical standards that ought to apply.•
research and therapy, one realizes that 'thera­
peutic' research is still research, and that the Outline Miller and Brody's argument in your own
ethical rules appropriate to it are those appropri­ words, paying particular attention to the premises that
ate for clinical research generally. Even though
the patient may derive benefit from treatment
being evaluated, the basic goal of the activity is
they rely on to support their main conclusion. Choose
one of the premises for evaluation. Try to think of at
least one objection to this premise.
Justice and Access to Health Care

rJi I
n this �h�pter, we explore the role of justice in determining access to health care. Clearly,
' 1 ... �.�fe _St�dy, _ 1 __ _ · .
{ �ealth 1s 1mponant. Without a reasonable degree of health, mental and physical, one cannot
Brandon was originally referred to Dr Johnston's practice Ordinarily in these circumstances, Dr Johnston hve well or �njoy li�e's essential goods, and if one suffers from poor health, it is not possible
by Student Health during his first year of university for would consider either increasing the dose of the anti­ for one _to exercise ones autonomy fully or execute one's choices. It is extraordinarily difficult
treatment of depression. After discussing his symptoms of depressant Brandon is taking or switching him to a to predict the loss of health or injury even for the most prescient individual, and when one is
insomnia, fatigue, and weight loss Dr Johnston prescribed different antidepressant. Dr Johnston is familiar with struck down by disease or i njur: the_ �medy can be costly. The centrality of health to well-being
the first of what, over the next three years, would be sev­ Serenil and believes that it shows promise for the and autonom:• �nd the unpred1ctab1hty of disease and loss of health, are what explain the fact
eral antidepressants. While Brandon would have periods treatment of chronic depression, especially in younger .
that the acqms1t1on of health care is a high priority for most individuals. That most individuals
of stability lasting from a few months to a year, eventually adults. However, ongoing clinical trials for the medica­ _
assign _ health a �igh priority is reflected in the fact that in almost all countries in which it is
either the medication stopped working or the side effects tion utilize a placebo control, meaning that half the financially possible, the state plays some role in the provision of health care.
became too bothersome. Despite his chronic depression, patients enrolled in the study will receive no treatment.
Our p �li�ical rhetoric often speaks of health care and its provision as a right. However,
Brandon continues to function at a high level, and is now In addition, data is not yet available concerning the .
in the final semester of his undergraduate degree. follow-up treatment of patients who withdrew from the m Canada it ts not the case that citizens have a constitutional right to health care insurance.
Today Brandon arr ives at Dr Johnston's office trials. Brandon is anxious to participate. "I've tried so It would not b � a �iolation of _Canada's Charter of Rights and Freedoms if governments simply
complaining about worsening symptoms. He says, "I'm many older drugs. I mean, what have I got to lose? How ceased to provide It. Instead, It 1s offered to a citizen as a matter of social policy; it is a privil­
starting to feel tired again, like I have no energy, and do I sign up for the trial?" ege that people have as citizens of Canada. Canada has developed a unique system of health
_
my motivation to do things is slipping." Brandon goes care �ehvery. The government, whether federal, provincial or territorial, is the only insurance
1. What are the potential benefits and harms for
on to describe a worsening of his depressive symp­ provider for those procedures that are considered by the Canada Health Act to be medically
Brandon in participating in the RCT of Serenil?
toms as well as a growing dissatisfaction with the cur­ necessary. When yo� visit a doctor for a check-up or you get your hip replaced in a hospital,
rent antidepressant's side effects. Then, he mentions a 2. How would the authors of the three articles in the procedures are billed to the government. For other services not deemed to be medically
recent conversation with one of his cousins, who also this chapter characterize Dr Johnston's obliga·
necessary by the Canada He�lth Act, Canadians must purchase private insurance or pay out
has a history of depression, in which she enthusiastic­ tions to Brandon in this case?
of pocket �o� the expenses mcurred. This is the way in which most people pay for dental
ally relayed her experience in a clinical trial for Serenil, 3. What should Dr Johnston do? Why? care a�d vision car �, and for prescriptio� drugs that are not provided in a hospital setting.
a new lithium-based antidepressant.
This s �stem strikes many as a plausible means by which to satisfy the need for health
care, c�ns1stent wllh the promotion of other social goods (e.g., education, environmental
Further Reading protection, and so �n). It is, however, essential to ask what might justify this particular sys­
te � of health care t�surance a nd whether it can be improved upon. This requires dealing
.
Canada National Placebo Working Committee on the humans [Internet}. December, 2010. Available from: wuh a deeper questl?n. What ts the basis for the claim that the state ought in some way to
.
Appropriate Use of Placebos m Clinical Trials in http://www.pre.ethics.gc.ca/eng/policy-politique/ provide �e�lth care '.nsurance to its citizens? This is particularly important in light of the
Canada. Final report [Internet]. Ottawa: Canadian initiatives/tcps2-eptc2/Default/. Date Accessed: fact that 1t 1s not enttrely obvious that the state ought to play any positive role whatever in
Institute of Health Research; 2004. Available from: 7 June 2012. the provision of health care.
http :I/www.cihr-i rsc.g c.ca/e/25139.html. Date Kimmelman J. The therapeutic misconception at In":'-� Ethical Framework for Access to Health Care," the members of the US President's
Accessed: 7 June 2012. 25: treatment, research, and confusion. Hastings Comm1ss10n for the Study of Ethical Problems in Medicine and Biomedical and Behavioral
Canadian Institutes of Health Research, Natural Center Report 2007; 37(6):36-42. Research argue that there is a social obligation to provide everyone with an adequate standard
Sciences and Engineering Research Council of Miller PB, Weijer C. Fiduciary obligations in clinical of care without excessive burden. The ground of this obligation is not a right. Rather, the
Canada, and Social Sciences and Humanities research. J Law Med Ethic 2006;34 (2):424-40. ground rests on the special nature of health care. The authors argue that what makes health
Research Council of Canada. Tri-council policy care spe �ial is its impact on well-being and opportunity, the kind of information it supplies,
Miller PB, Weijer C. Rehabilitating equipoise. Kennedy . _
statement: ethical conduct for research involving
Inst Ethic J2003;13 (2):93-118. and the interpersonal significance of that with which it deals, namely, birth, illness, and
144 CHAPTER 8 Obligations to the Global Poor

met, philanthropy for the arts would be a noble act


million could have given 100,000 women another Sadly, we don't live in such a world!
chance at a decent life. At $1000 a life, it could
have saved 45,000 lives-a football stadium full of Outline Singer's argument in your own words, pay­
people. How can a painting, no matter how_ beauti­ ing particular attention to the premises that he relies
ful and historically significant, compare with that? on to support his main conclusion. Choose one of the
If the museum were on fire, would anyone think premises for evaluation. Try to thi n k of at least one
it right to save the Duccio from the flames, rather objection to this premise.

Assisted Suicide and Euthanasia


than a child? And that's just one child In a world
in which more-pressing needs had already been

D
o Canadians suffering from a painful and incurable disease have a moral right to ask
care provision.
other health people is needed to establish basic health their physician to help them die if this expresses their autonomous wish? If they hold
It is not uncommon for doctors, nurses and Canada has about 1'2 such work ers for every 1000 of
ed in deve lopin g natio ns, e.g., the such a right, should the practice be permitted as social policy, or will it inevitably lead
care workers train its citizens. By contrast, the coun tries in Afric a have on
loped nations.
Philippines and Ghana, to immigrate to deve average only 1.4 per 1000 . If a healt h care profe ssion�! to unacceptable abuses? Many Canadians believe that assisted suicide and voluntary euthanasia
onment, pay,
This is often a result of the tact that the envir moves from sub-Saharan African to Canada,
she he 1s
or ought to be permitted. According to a 2010 Angus Reid Poll, 67 per cent of respondents indi­
ever, it is often also
and working conditions are better. How moving from a location with a serious short
fall of medical cated that they are in favour of legalizing voluntary euthanasia; and an even greater proportion
on beha lf of wealthy
the result of being recruited by or professionals to a location that is already more than able (85 per cent) said that doing so would provide people who are suffering with a chance to ease
th Auth oritie s, private
nations. In Canada, Regional Heal to meet its basic health care needs. their pain. Legalization would require changes to the Criminal Code of Canada. While it is not
gove rnme nts recru it fore�gn­
companies and provincial a criminal offense to commit suicide, assisting another in their suicide is punishable by up to
ists, pro-
trained health care profe ssion als, inclu ding phar mac 1. Is it wrong for Canada to recruit health care . 14 years in prison (section 24 l(b)). Voluntary euthanasia falls under the prohibition of murder
s. An incre asing num ber of thes e from areas of the world that are expe ri­
nurses, and physician fessionats in section 229 of the Criminal Code, and is punishable by a mandatory minimum sentence of
have '? Wh{l
health care professionals (especially phys
ician s) encing a shortage of health care providers
ran Afric a, a regio n which suf­ deciding life with no possibility of parole for 25 years. The obstacles to legalization are practical as well
been train ed in sub- Saha
burden. The ?, Which factors are most important to as legal. According to a 1996 survey of Canadian physicians, if assisted suicide or voluntary
se
fers from '25 per cent of the world's disea this question'?
mak es it difficult euthanasia were legalized, the majority of physicians (55 per cent) indicated they would not
loss of such health care workers often implica­
healt h outc ome s. Data 3 Do the theories discussed above have participate in either practice.
or impossible to achieve positive tions tor the ethics of recruiting healt care
h pro­
th Orga nizat ion show s that The readings in this chapter consider the moral permissibility of assisted suicide and
produced by the World Heal viders from the world's poorest regio ns'?
d healt h care work ers per 1000
an average of 2.5 skille voluntary euthanasia. In the first reading, the Royal Society of Canada Expert Panel argues
for permitting assisted suicide and euthanasia in Canada. According to the Panel, there is a
-- - broad social consensus that autonomy-the right to decide for oneself how one's life ought
Frn thcr Rc.tcling to proceed-is a core value for Canadians. If a person concludes, on the basis of careful
ate;
. Available philosophy of public health. Aldershot: Ashg deliberation and consistent with a stable set of values, that his life is no longer worth living
Academics Stand Against Poverty [Internet] '2009. p. 73-84. then he has a moral right to request assisted suicide or voluntary euthanasia. It is important
aljus­
from: http://ww w.yale.ed u/macmillan/glob n et]. Yale: to note that the Panel does not restrict this right to individuals who are terminally ill; it is
tice/ASAP.htmL Date Accessed: 10 June
201'2 . Ince ntive s tor Glob al Hea lth (In ter
er for
EN, editor. The Whit ney and Bett y MacMilla Cent n the right of all people who are suffering. It is well recognized, however, that the autonomous
Blake M. International Justice. In: Zalta Internatio nal and Area Studies at Yale . Avai lable claims of individuals are limited insofar as they put others at risk. Thus, before assisted
of philo soph y [Internet].
Stanford encyclopedia from: http://www.yale.ed u/m acmi llan/ igh/. Date suicide and voluntary euthanasia are adopted as social policy, the consequences of enacting
from : http: //pla to.st anfo rd.edu/
2005. Available Accessed: 10 June 2012 . such a policy must be carefully considered.
tiona l-jus tice/ . Date Acce ssed : 10
entries/interna s. 2nd ed.
June '201'2 Pogg e T. World poverty and human right The debate about the social consequences of assisted suicide and voluntary euthanasia
and our Cambridge: Polity Press; '2008. centre on slippery slope arguments. The Royal Society of Canada Expert Panel considers two
Brock G. Health in deve lopin g coun tries broad types of these arguments. Conceptual slippery slope arguments posit that vagueness
Daw son A, edito r. The
global responsibilities. In: in key terms, such as competence, will lead to an unacceptable expansion of practice. The
Panel rejects this, believing that clear lines can be drawn, for instance, between competent
and incompetent requests for assisted suicide and euthanasia. Causal (or empirical) slippery
slope arguments posit that once assisted suicide and voluntary euthanasia is permitted,
human decision-making driven by psychological, social, or institutional factors will lead to
an unacceptable expansion in practice. The members of the Panel believe that the experience
CHAPTER 9 Assisted Suicide and Euthanasia Schuklenk, van Delden, Downie, McLean, Upsh
ur, and Weinstock: Royal Society of Canada Expert Panel
10
1-47

in such policies from other countries (including the Netherlands) is reassuring, and that Core Values
effective regulation can prevent abuses from occurring. right to be free Jrom medical treatment to whic
In the second reading, Benjamin Freedman reviews the Supreme Court of Canada's What are the values over which there is bro individual does not consent. This concept of indiv
h the
ad societal
most important decision regarding assisted suicide, Rodriguez v.British Columbia (Attorney consensus as evinced by Canada's foundatio autonomy is fundamental to the common /aw. "I
idua l
nal texts
General). Sue Rodriguez was afflicted with a progressive neuromuscular disease that would and institutions? The Panel holds that the value
---- of indi- The centrality is, importantly, also affir
leave her unable to commit suicide at the time of her choosing. She sought, therefore, to vidu al auto nom y ... Rodriguez med in
have section 24 l(b) of the Criminal Code overturned on the grounds that it failed to provide
I sho uld be seen as v. , the
Revealed or indicated by; the claim
Evinced Briti sh Colu mbia (Attorney General)
cas� that reaffirmed the criminal status of
persons with disability with equal protection and benefit of the law without discrimina­ is that the presence of clear values paramount, though physician­
tion. Able persons can commit suicide at the time of their choosing; persons with advanced in Canada's foundational texts and not as exclusive.... �ss1sted death, where Justice Sopinka refers to the
institutions is evidence that such imp �rtance of"control over one's physical and psych­
neuromuscular disease require assistance to commit suicide late in the course of their The phi losoph­
values are broadly endorsed by olog1c�l integrity."2 Thus, ...the value of
autonomy
disease, and this is precisely what section 24l(b) prohibits.Freedman points out that, in ical and institutional
Canadians. occupies a paramount place among the
fact, at the time of application Sue Rodriguez was able to commit suicide.The question at importance of indi­ values of
Canada's constitutional order....
issue was not whether the disabled have the right to kill themselves (they do), but rather . vidu al autonomy for
hberal democracies is dearly reflected in the uton my is properly conditioned and limited
whether others may be legitimately involved in the act of suicide.As Freedman puts it, the decisions cons�1der � by
question is "the right to publicly ratify, in court, a new form of cooperative action bent upon that have been taken by the Supreme Court auons to do with ..."public safety, orde
of Canada health, r,
inducing a certain person's death.� Freedman's deep reservations about allowing a novel since 1982, when a Charter of Rights and Free or morals or the fundamental rights and free­
doms
right of "cooperative action" in a person's death stem from causal (or empirical) slippery was entrenched in Canada's Constitution, �oms of others". 3 Equality is clearly also a core value
and in m our
slope concerns.The proposed requirements that assisted suicide be restricted to terminally constitutional order....
the lang uag e tha t
Informed choice ... constitutes a central pilla
ill patients, who are fully informed and of undoubted competence, and whose request for the members of the r of
contemporary health ethics and of Canadia
assistance in dying is firm and unwavering are all, he argues, open to dangerous expansion A biff of rights entrenched in the l Cou rt have chosen in n heal th
Charter of Righ ts and Freedoms
law. Informed choice is grounded in auto
in practice. Constitution of Canada by the orde r to justify their nom y· it
Constitution Act and the Canada
seeks to apply the abstract value of autonom
In the third reading, Downie and Sherwin provide a feminist analysis of assisted suicide deci sion s. W hat is ous de�i ­
Act of 1982. The Charter of Rights sion making to the context of health care.
and voluntary euthanasia. Their analysis relies upon the concept of relational autonomy, striking is just how It requires
and Freedoms greatly expands the that competent patients must not be subj
ected to
which understands the person as an essentially social being, whose relationships with others cen tral they hav e
scope of judicial review of provincial treatment unless they have consented to
play an integral role in shaping the self and which may foster or inhibit autonomous action. and federal statutes and regulations take n indi vidu al self­ consent is it.4 That
subject to three conditions: first, it must
Relational autonomy helps us focus on the effects of a person's position within an oppressive by the courts. Protections relevant determination to be in
be uncoerced; second, it must result from the
power structure on her competency, voluntariness, and choice to die at home.Dowme and to this debate include the right decisions that relate decision
. to life, liberty, and security of the mak ing capacity of a cognitively competent indi
Sherwin argue that gender socialization may diminish a woman's competency for autono­ to the area of health vid­
person (Section 7), the right not to ual; and third, it must be informed.A conc
mous decision-making.As a result, oppression-sensitive standards for assessing competency care....For example, epti on of
be subjected to cruel and unusual autonomy can thus be read in informed choi
ought to be developed. They further argue that women may be at greater risk of deciding punishment (Section 12), and the in Clar /arle /lo v. ce as the
cornerstone of modern medical ethics and
to end their lives so as not to burden others, and that the voluntariness of these decisions right to equal protection and benefit Schacter, the Cou rt Canadian
health law. An autonomous person would
requires careful attention.Finally, home care may simply not be an option for elderly women of the law without discrimina ion affi rme d pati ents' accord­
(Section 15). :J ing to this conception, be a substantively co�n
if demographic patterns of the greater longevity of women continue.Thus, the special needs
of elderly women ought to be accounted for in social policy.
-- rights to refuse treat­
men t and to have
c�mpetent and uncoerced individual who
itively
arrives at
his or her decisions after having been offer
-.. treatment withdrawn ed relevant
information about the decision at hand.
The act of intentionally killing A 1993 decision of the Supreme even after it has
Assisted suicide Ciarlariello v. Schacter

oneself with the assistance of Court of Canada that established a begun.Justice Cory,
■•m The Royal Society of Canada Expert Panel: another person. For instance,
when a patient deliberately takes
a fatal overdose of prescription
patient's right to withdraw consent
after a procedure has begun. After
a suspected bleed into her bra n
writing for the Court Autonomy and
wrote:
Assisted Death
If �utonomy is a central constitutional valu
End-of-Life Decision Making e, then it
drugs provided by her physician Mrs Ciarlariello underwent two �uite _dearly grounds the right to request assistance
Udo Schuldenk, Johannes J.M. van Delden, Jocelyn Downie, Sheila McLean, for that purpose. angiograms to image the blood "Every patient has a m dy ing according to one's considered and
vessels in her head. During the stable
views about when one's own life is not wort
Ross Upshur, and Daniel Weinstock I Royal Society of Canada Expert Panel.
second procedure she began
right to bodily integ-
h living
The act of one person killing
Voluntary euthanasia
any longer ....
End of Life Decision Making. Ottawa: Royal Society of Canada, 2011.
to hyperventilate and asked the
rity. This enco m-
another in accordance with the physician to stop. The procedure passes the right to If we believe that one of the roles of the
competently expressed wishes state is
Introduction wa� nonetheless completed, and she to provide people with the institutional
of that person. For example,
dete rmine wha t
suffered a severe reaction that left fram ework
... The Panel holds that there is both sufficient con what the legal status of when a competent pat'ent asks j
medical procedures
': ithin which they can lead autonomous lives
her a quadriplegic. Will be accepted and , that is,
sensus with respect to core values in the Canadian assisted suicide and her physician to kill her, and the - hves that reflect their values, convictions,
- --- and con­
policy context and a sufficient grasp of the relevant physician injects her with a lethal ceptions of what makes life worth living,
voluntary euthanasia
---
the extent to which
dose of drugs. it follows
that the state should, to the degree that it
they will be accepted. Everyone has the right to decid
facts that Justifiable conclusions can be drawn about should be... . e
is able to ..
protect citizens against obstacles to their bein
what is lo be done to one's own body. This includes
g able to
the
14& CHAPTER 9 Assisted Suicide and Euthanasia Schuklenk, van Delden, Downie, McLean, Upshur, and Weinstock:
Royal Society of Canada Expert Panel 148

live their lives according to their own lights. that assistance with suicide or voluntary euthanasia will euthanasia many of the concepts employed to cre­ By fixing
the minimal age requirement at 16, society
The state should be particularly vigilant in pro­ be administered to less than fully competent patients ... ate guidelines and criteria to limit the practice to attem
pts to do as well as possible in ensuring that
tecting citizens with respect to the important choices or to people who fail to satisfy the voluntariness con­ morally acceptable cases are vague. A good example only
competent people get on the road, accepting a
in their lives....Who to marry, what religion to pro­ dition.s...In other words, decriminalizing morally is the concept of competence. The argument of this certai
n number of false negatives and false positives
fess, if any, whether to have children or not; these are permissible cases of assisted suicide and euthanasia Report proposes that the practice should be limited as
an acceptable cost for allowing people to be able
choices that contribute powerfully to an individual's 1 might create a slippery slope that could lead to assisted to competent individuals.Philosophical literature to drive
.
being able to view her life as one that corresponds to suicide and voluntary euthanasia occurring in morally on the subject and clinical practice show that ... The exponent of the slippery slope argument
her "conception of the good life." Deciding how one impermissible circumstances....Thus, slippery slope the line between competence and incompetence is again
st assisted suicide and voluntary euthanasia
will die clearly belongs to the choices that ought to be arguments tacitly concede that certain cases of assisted ambiguous at best. will naturally disagree with the analogizing of cases
protected by the state, given our commitment to indi­ suicide and euthanasia are r --... The conceptual slippery slope argument against of public
policy with cases in which moral princi­
vidual autonomy.The manner of our dying reflects morally permissible, but Slippery slope argument assisted suicide and voluntary euthanasia takes the
ples are in play. Whereas the former are amenable
our sense of what is important just as much as do the caSt doubt on our abiI ity An argument that permitting ambiguity of the concept as the premise of an argu­ to
cost/benefit reasoning, the latter, he or she will
a desirable action will lead to
other central decisions in our lives.... to institutionalize them undesirable consequences and ment that practicing assisted dying on incompe­ claim
, are not. Thus, the argument might run, when
The commitment to autonomy, which is a corner­ without producing catas- that, as a result, the desirable tent people is unavoidable. The argument takes the the
placing of an arbitrary line at one point rather
stone of our constitutional order, thus quite natur­ trophic consequences... . action ought not be permitted. form of . .. a sorites paradox: for every competent than
another risks placing the defense of a princi­
ally yields a prima facie right to choose the time and Opponents of assisted sui- ' In many cases, the claim is that person, there will be one just slightly less compe- ple
on the wrong side of the line, we should avoid
conditions of one's death, and thus, as a corollary, to cide argue, in panicular, the desirable action makes -- ____ tent, where the dif- drawi ng lines altogether, and ( ----:- -- -
the undesired consequences ----,
request aid in dying from medical professionals.... that the decriminalization more probable but not certain Sorites paradox ference between the prescind from the impugned Pre_scind
of this practice will elicit and, thus, such arguments are A paradox that can be constructed / two ha rd 1 y see ms pracuc . [ Avoid or separate ourselves from.
from vague predicates such as "tall,' e ... no matter what __ __ __ __
a slide into involuntary logically invalid. significan t enou gh the potential benefit.Thus, for
Arguments Against the Legal Right euthanasia.6... 'rich' or, in this case, 'competent.' example, if it is settled
to Assisted Death For example, consider a heap of j to ground the claim that stringency test "X" accommodates requests for
Slippery slope argu­ sand from which grains of sand are that one is competent assisted dying , and that there exists a
removed one at a time: is it still a more stringent
It does not follow from the fact that an individual has a ments are, in almost all Logically invalid argument whereas the other is test "X+l," the space between "X"
heap of sand when a single grain / and "X+l" can be
moral right to X that she should also have the legal right cases, logically invalid A logically valid argument is not. But then, there cashed out in terms of lives lost
one i n which the truth of the of sand remain s? If not, when did it that ought not to
thereto. ... The existence of a moral right establishes arguments. ... Literature will be a person just have been lost.Thus the most string
premises guarantees the truth of cease to be a heap of sand? Also ent test there is
a presumption in favour on the logic of argumen­ the conclusion.A logically invalid known as the paradox of the heap; / slightly less compe- should be chose
n: name ly outrig ht, or almos t out -
Moral right of the establishment of a tation distinguishes two argument is one in which this is not sorites derived from the word in tent than the second, right, prohibition.
A particular kind of constraint on what
it is permissible to do to a person.
legal right. . . .The Panel basic forms of slippery the case. No1 all logically invalid
,_ �
ncient Greek for "heap."
__
_J and then another just This line of argument can be resisted in a num­
will . . .now consider an slope argument. Both arguments are bad arguments. slight ly less com pe­ ber of ways. First, prohibition will not
If one has a right to die then it is lead to the
impermissible for another person to argument to the effect that types are present in the For instance, 1n many scientific tent than the third, and quickly, medically assisted elimi
nation of lives lost through assisted dying. It
arguments, the truth of the dying is being practiced on patients of whom it will
interfere with actions that facilitate though there may very well assisted suicide and vol­ premises makes the conclusion rather mean that the practice will continue as it
this aim. The right to die is a liberty
right, which implies the absence of a
duty to refrain from killing oneself, in
exist a prima facie right to untary euthanasia debate. more likely (but not certain).
assisted death, this right is Some slippery slopes are
defeated by countervailing They claim the concepts used to set
-
up
would be very difficult indeed to claim that they are does
competent .. ..
The conce ptual
absen
in all jurisdictions where it is prohibited in the
ce of any principle or institutional safeguard.
addition to the absence of a duty to kill conceptual. slippe ry slope argum ent agains t Secon d, moral costs must be reckoned that flow both
oneself. This right does not typically considerations, such as the criteria governing a practice are fuzzy, and that this assisted suicide and voluntary euthanasia points to from
permission and from prohibition-the moral
imply a duty that others assist, unless rights of third parties. . . . conceptual vagueness ----------·- a real problem.But it is a problem that is ubiquitous costs
of the latter are needless suffering and thwart­
they consent to doing so. This line of argument war- will lead to the practice Conceptual slippery slope across the full range of areas in which public policy ing
the wills of autonomous individuals.7... We must
rants our attention because being abused. Others are argument and laws are enacted.Seeing it as a reason to rescind accou
A sl ppery slope argument nt, ... in other words, . .. for the costs of not
it invokes a value that causal. They claim that if from enacting such laws and policies would lead to drawi
Legal right in which the undesired ng a line somewhere.
An entitlement established by legal clearly has the same kind a certain morally accept­ consequences of the desired stasis.Consider a much less dramatic area of policy
Finally, the vagueness of concepts can only be of
principle, court decision, regulation of foundational status that able decision or policy action are brought about as a such as the determination of the age at which individ­ limite
d use to the partisan of slippery slope arguments.
or statute. autonomy has in our con- is implemented, causal result of ambiguities in a concept uals can obtain a driver's license. There is no bright For,
though a concept like that of competence is ambigu­
stitutional moral order­ mechanisms will be put in key to the desirable action.In this conceptual line that separates the competence and ous,
case, ambiguit es in the concept it cannot be reasonably inferred that there are not
the safety and security of the Canadian population, and motion that will unavoid­ reliability of a person of 15 years and 364 days and a clear,
of competency undermine the paradigm cases of competence and. correspond­
its most vulnerable members.... ably lead to other, morally person of 16 years.The gain in competence from one ingly,
ability to clearly demarcate that there are not paradigm cases of incompe­
The main reason that might block the passage from dubious, decisions .... competent wishes to die from day to the next is infinitesimally small. tence. The fallacy of the sorites paradox upon which the
the morality to the legality of assisted dying has to do According to con­ incompetent ones.As a result, Since it is not acceptable not to grant people driv­ conceptual
slippery slope is grounded claims there will
with the concern that ... it would be difficult or impos­ ceptual slippery slope permitting voluntary euthanasia ers' licenses because of our inability to determine not
come a point when the succession of imperceptibles
sible to design protective institutional mechanisms to ar g u m e n t s a g a i n st will inevitably lead to instances of thresholds of competence with precision, the law gives
rise to cases in which it is known that-it is no

oversee the decriminalized practice....A fear might be assisted suicide and '------------.� non-voluntary euthanasia. establishes a line that is to some degree arbitrary. longer
competent individuals being dealt with.
150 CHAPTER 9 Assisted Suicide and Euthanasia
Freedman: The Rodriguez Case 151

Causal slippery slopes, being based on empir­ Much already existing public policy takes pre­ individuals.The present dispensation is fraught with
facie moral right to assisted suicide, fails....The
ical premises, are not amenable to logical refutation. cisely the form just described. Measures are taken, all of the anxiety and needless suffering that attends slip­
pery slope argument ...from the decriminalization
Unless their empirical and watchdog institutions are put in place to guard any policy area governed by arbitrariness and lack
of assisted death in voluntary contexts to acceptance
Causal slippery slopes premises run counter to against abuse; ... for example auditors general and of clarity rather than transparent, democratically
of euthanasia in non-voluntary contexts ...does not
Slippery slope arguments in which the laws of physics, they ombudsmen .... There is no reason to think that enac�e� n�r�s....Evidence ...strongly suggests
the undesired consequences of the constitute a refutation of the argument in favour of a
invoke real possibilities. this could not also be done in the case of assisted that JUrtsd1cuons that have liberalized laws concern­
desired action are brought about as legal right to choose assisted death. Instead, it points
It is, rather, that human death. ... In designing the regulatory structure ing assisted death have not succumbed to slippery
a result of empirical (psychological, s t?ward safeguards that must accompany decrim­
social, institutional, etc.) mechanisms. decisions will unavoid­ that would govern the practices of voluntary eutha­ slopes....Opponents of decriminalization have not � _
nahz auon....With this conclusion, the argument
The plausibility of such arguments ably give rise to other nasia and assisted suicide, some of the arguments of adequately taken into account the very real costs and :
m favour of a legal right to choose assisted death
turn on evidence that the mechanisms human decisions, and opponents of these practices should be attended to, ha�ms that the present situation regarding assisted
do in fact bring about the undesired _ is complete. We have shown that there is a strong
that, whereas the first not because they are convincing as refutations of the dymg m Canada involves.
consequence and that regulation is utonomy-based argument in favour of the right that
set of decisions were practices in question, but because they do point to The Panel concludes that an important argument, �
unlikely to be eff ective in preventing 1s not defeated by other constitutional values to do
it. These are also referred to as morally acceptable, ... potential risks against which prudent policy-makers that would .., block the legal recognition of the prima
with safety and security, or the rights of third parties.
empirical slippery slope arguments. the second set of deci- will want to take steps to counteract.
sions . . . are clearly Some slippery-slope arguments suggest real risks
unacceptable.The inevitability of the second set of and ... deserve attention .... First, the argument Study Questions
decisions is seen in this way to impugn the first. in this Report limits the justification of assisted
These arguments imply that such mechanisms dying to competent persons.Safeguards must be put 1. According to the authors, why is there a broad
will hold sway, even when the possibilities are laid in place ... to ensure that assisted dying is only societal consensus that autonomy is a core value in 3. What is the causal (�r empirical) slippery slope
_
bare and steps are taken to counteract them ... . provided to competent agents. Second, opponents Canada? argument agamst assisted suicide and voluntary
Consider: an agent supports "Decision l," but has of the decriminalization of assisted dying often for­ euthanasia? How do the authors deal with it?
2. How does autonomy support a moral right to
serious moral qualms about "Decision 2," which mulate the fear that it would lead to a reduction in assisted suicide and voluntary euthanasia?
may flow from "Decision l." She is aware of the resources for ...palliative care, and for ... persons
fact that there are empirical (psychological, social, with disabilities....This fear is not unfounded....
institutional, etc.) mechanisms that may make it Institutional safeguards must be put in place that
more likely that "Decision 2" will come to seem would be effective in offsetting the risk in ques­ Notes
more plausible to some, once "Decision l" has been tion.... Decriminalization ...could be accompan­ 1. Ciarlaridlo v. Schachter, (1993] 2 S.C.R 119 at 135 (empha
­ decriminalized it and there was no data to either confirm
taken. This person is aware of the risk of a slip­ ied by legislation requiring that funding of programs sis added) See also Hopp v. Lepp (1980), 112, D.l.R. (3d) or
67 d 1sprov: the worry-now no longer exist. See Downie
(S.C' C.), and Reibl v. Hughes (1980), 114 D.L.R. 3d I (S.C.C.) J and
pery slope, but intent as she is to resist it, she will related to palliative care, ...chronic diseases and dis­ . Bern S. Rodnguez Redux". Hea/ch LawJournal. 2008,1
2 Rodnguez v. British Columbia (Attorney General) [19931 6:27-
3 s.c.R. 54. 0� the ge�eral appropriateness of the Suprem
put safeguards in place-both psychological and ability be maintained at certam levels. ..Legislation 519 at 588 e Court
3. R. v. Big M Drug Mart Ltd. (1985) I S.C.R. 21 I at 397. engag i ng in shpper)' slope reasoning, given that it does
institutional-to make it less likely than it might could be accompanied by the creation of a watchdog have the wherewithal with which to handle the
not
otherwise have been that policy or "Decision 2" will body ...with a public education mandate .... 4. Faden RR and Beauchamp TL A History and Theory ofInforme relevant
d evidence, see Freedman B. "The Rodriguez Case·
Consent. New York: Oxford University Press; 1986. Sticky
come to be adopted as a result of policy or "Decision The logic of slippery slope arguments, most 5 It 1s appropriate to note at this point that the decisio
Questions and Slippery Answers." McGill Lj. 39:644
.
n not to 6. Somerville M. "Euthanasia's Slippery Slope•. in Th
1" having been adopted. charitably construed, is that there are certain risks grant Sue Rodriguez the nght to receive medically assiste e Mark at
d http://www.thema rk news.com/articles/ 1146-euthan
The supporter of slippery slope arguments .. . that might accompany a pohcy, and that those risks death was grounded not in the Jusuces' denial of the value asia-s­
of shppery-slope>. [Accessed 26 July 201 I).
will have to claim, not only that a slippery slope are so grave, and/or society's capacity reliably to ind1vi�ual autonomy, but in large measure on slippery slope
7. These poims a re made in most philosophical tr
reasoning on the part of the majority Justices. It is quite likely _ eatments of
might be set in motion by the adoption of "Decision counteract them so limited, that it would be better that the same Supreme Court would have decided the
euthanasia and physician-assisted suicide. See, most
recently
issue W�rnock � and Macdonald E. Easeful Death: Is there
1," but that it will overpower whatever-legal, insti­ not to enact the policy. This logic is premised on differently, given the fact that two of the reasons that a caseJ0;
the asmced dying? (Oxford: Oxford University Press, 2009).
tutional, psychological, moral-resistances and safe­ a faulty assumption, namely that the status quo is Court had this worry-namely that no other country
had
guards responsible citizens and politicians, aware itself without costs or risks, and that the only costs
of the risks, are intent on putting in place in order and risks to be factored into our deliberations are
to avoid the morally problematic decision being the ones that accompany the move away from the
made....Indeed, slippery slopes might fail to even­
tuate not only because ...the causal mechanisms
status quo.But this is never the case.... The prac­
tice of assisted death presently occupies a shady area ■Wt•
. ■. The Rodr'1guez Case: Stack
· y Questions and Slippery Answer
BenJanun Freedman I McGill Law Journal 1 S
linking a morally acceptable decision or policy to a in which it is both prohibited, and the prohibitions 994; 39: 544.56.
morally problematic one may not be as reliable as against it sometimes unenforced. The result is that
hypothesized, but also because there will be various assisted dying presently goes on in various medical Introduction
obstacles built along the path of the slope that are the contexts in Canada, governed not by transparent,
result of deliberate human intent. ... reliable norms but by the private convictions of
In its decision in Rodriguez v. Canada (A.G.)I the
Supreme Court of Canada came within a whisker of
transf�rming Canadian legal and medical practice '
regardmg euthanasia and assisted suicide....tost in
162 CHAPTER 9 Assisted Suicide and Euthanasia
Freedman: The Rodnguez Case 153

the judgments ...are two cognizance of a state interest-in effect, that the broad The factual nature and background of Rodriguez
Sue Rodriguez (1950-94) 's assistance is required over time. ... Ultim
An advocate of assisted suicide, essential issues raised by social implications of a decision can help to determine case, as well as the way in which her request involved ately all
capacity for motion is irretrievably lost, and with
Rodriguez was diagnosed with the case. First, what was (or undermine) private assertions of right.4 He cited not autonomy and private action but rather the legall it,
y­ all prospect for communication. ...
amyotrophic lateral sclerosis (also Sue Rodriguez actually with approval the conclusion of the Law Reform sanctioned social construction of death machines, ALS does not
known as Lou Gehrig's disease) in is damage the intellect, however....This is
requesting from the Commission of Canada, arguing that in the event of denied or obscured in all of the judgments.Sopinka the macabre
early 1991.She fought to have a legal j. progression Ms Rodriguez faced, providing
Court-as opposed to a legal reform permitting writes: ... 'The prohibition in s.241(b) deprives the back-
right to assisted suicide in a series the drop against which her lawsuit seeking
of highly publicized court battles. On the issue that the Justices euthanasia or physician- Law Reform Commission of appellant of autonomy over her person and causes the right to
her assisted suicide must be understood....
30 September 1993, in a landmark were actually deciding? assisted suicide, "there is Canada (1971-93, 1997-2006) physical pain and psychological stress.The comp
laint Sue Rodriguez had chosen to manage her dyin
decision, Rodriguez v.British Second, how should no certainty that abuses An independent body that was is that the legislation is over-inclusive because it g
Columbia (Attorney Genera/), the created to study and undertake does process by killing herself, but she did
society reason about that can be prevented ";5 not exclude from the reach of the prohibition those not approach
Supreme Court of Canada held that a systematic review of Canadian the Court to seek that right, since suicide had
actual request? ... I will and, noting Dutch evi- in the situation of the appellant who are terminally been
there was no legal right to assisted law. Disbanded in 1993 as a part letalized (or more precisely, decriminalized) deca
suicide by a vote of 5 to 4. In 1994, discuss both issues.... dence . . . "relaxation of federal budget cuts, it was ill, mentally competent, but cannot commit suici des
de before. At the time of the initiation of this
she decided to take her own life with of the absolute prohibi- resurrected in 1997 as the Law on their own, ..."9 litiga tion,
and for a long time thereafter, Sue Rodriguez retai
the help of an anonymous physician. tion takes us down 'the Commission of Canada. The basis of McLachlin J's judgment is that the ned
slippery slope."'6 Chief ------·---i the capacity to kill herself.Yet as long as she retai
law against assisted suicide denied Rodriguez a right ned
this degree of capacity, she found life worth livin
Justice Lamer rejected such an argument as a legal (to commit suicide) that was available to others.She g and
The Court's Question matter: "While I share a deep concern over the subtle writes: "It is argued that the denial to Sue Rodriguez
chose not to exercise her suicide option.Her speci
fic
The Rodriguez case is commonly understood to pose desire was to have the assistance of a physician
and overt pressures that may be brought to bear on of the capacity to treat her body in a way avail m
able installing a self-activated device whic
the question of the legality of physician-assisted sui­ such persons if assisted suicide is decriminalized, to the physically abled is justified because to perm h she could
it actuate at a time of her own choosing....
cide, or more specifically, the constitutional question even in limited circumstances, I do not think legisla- assisted suicide will open the doors, if not flood
­ The Justices seem to have all agreed with her on
of whether the Canadian criminal prohibition on tion that deprives a disadvantaged group of the right gates, to the killing of disabled perso ns who may
assisting suicide is contrary to the Charter. 2 . . . These this crucial point: it is unjust to allow an able-
to equality can be justified solely on such speculative not truly consent to death ....In short, it does not bod­
are the marks of the "slippery slope": the proponent ied person to kill himself or herself and to deny
grounds, no matter how well intentioned ...we sim- accord with the principles of fundamental justi a
ce handicapped person assistance to achieve
of a change seeks to emphasize the limited nature of ply do not and cannot know the range of implications that Sue Rodriguez be disallowed what is available the same
the question, while the opponent insists upon analyz­ end.But the Justices all erred in finding equivalenc
that allowing some form of assisted suicide will have to others...."10 At a structural level Mclachlin J's y
ing the broader implications of an answer....Justice between a private right to kill oneself, which
for persons with physical disabilities.What we do argument requires that one accept that Rodriguez only
Sopinka saw the case as posing a broad question, not calls upon others not to interfere, thus literally
know and cannot ignore is the anguish of those in is incapable of committing suicide, and that her asks
co­ them to do nothing, and the right Sue
restricted to the terminally ill. He stated: "The result the position of Ms Rodriguez.''7 optation of the legal and medical systems to the end Rodr igue z
of the reasons of my colleagues is that all persons who sought: the right to publicly rat1fy, in court, a
There is a conceptual or logical, as well as an of managing her death in the manner and at the new
ume form of cooperative action bent upon indu
by reason of disability are unable to commit suicide empirical, version of the slippery slope argument. that she chooses is a pnvate exercise of her own self­ cing a cer­
have a right under the Canadian Charter of Rights and tain person's death....
The Justices spoke of the empirical slippery slope. determination....
Freedoms to be free from government interference If assisted suicide is permitted under careful con­ The questions remam: If a person has a right
Structurally, since Lamer C.j.relied upon a claim to
commit suicide, how broadly should such a right
in procuring the assistance of others to take their ditions (of free and informed consent and compe of equality rights, he too was committed to argu be
ing construed? Should it include both the nega
life." However, Madam Justice McLachlin insisted, tence, for example), will society experience abuses that the right to commit suicide in private with tive right
out of non-interference and the positive right
to the contrary, on speaking of one specific disabled as a result? ...The conceptual slippery slope instead others interfering is equivalent to the right to arran to seek
ge assistance (or perhaps even to have assis
person who happens to be facing inevitable death. asks, "By accepting the Rodriguez claim-or, what one's death with the assistance of medical personnel tanc e pro­
She writes: "Our task was the much more modest one vided)? ...What do we as a society mean by
the Justices understood to be the Rodriguez claim­ and with the knowledge and approval of the Cana a right
dian to suicide, and what consequences are
of determining whether, given the legislative scheme to what has society rationally commmed itself, under judiciary. The ChiefJustice, however, recognized we prep ared
that to bear on behalf of that nght? ... Thes
regulating suicide which Parliament has put in place, logical canons of consistency?" this case did not concern one who was at the e questions of
time the slippery slope, that lie at the heart
the denial to Sue Rodriguez of the ability to end her And here, there is troubling consistency within incapable of committing suicide .... of any dispute
life is arbitrary and hence amounts to a limit on her over assisted suicide, cannot be adequately addr
the Court. The case before them was brought by essed
security of the person which does not comport with in any court other than one of public opinion....
an individual who was, and remained, capable of
the principles of fundamental justice." 3 suicide, and whose personal freedom of action was Sue Rodriguez's Question
As the argument progresses ...other traditional unimpaired by law.8 Her claim was not, then, self­ Sue Rodriguez suffered from a motor neuron disea The Slippery Slope: Considering the
se,
hallmarks of the slippery slopes argument can be regarding. Rather, what she desired was that a new amyotrophic lateral sclerosis (ALS), that progressiv
ely Social Impact of Approved Assisted
discerned.Justice Sopinka maintained, per contra form of cooperative action be legalized-one involv­ destroys the body's capacity for movement....Whe Suicide and Euthanasia
n
McLachlin J., that the ing a decision and a "final act" on her part, and the told the diagnosis of ALS, the typical patient has
the The slippery slope reflects a complex of considera
Per contra principles of fundamen- construction of some suicide device on the pan of physical capacity to exercise the full range of tions
A Latin term meaning on the contrary. ] tal justice must take suicidal regarding normative (legal, ethical or behaviour
al)
doctors and others (technicians, bioengineers, etc.). acts.The range diminishes over time, and incre
asing social changes.... What unmtended, deleteriou
s,
16' CHAPTER 9 Assisted Suicide and Euthanasia
Freedman: The Rodriguez Case 155

"' ineluctable effects are the terminally ill leads to increased suicide of the judged relative to the social acceptance of the
choice �onstitutional deliberations. As Char
Ineluctable
they likely to have over mentally infirm.... "Efforts to destigmatize eutha­ in question. Compare one case of ambivalent eutha ter jurisprudence
Unable to be resisted or avoided; ­ is constructed, once an infringement ofa
inescapable. time? Arguments from nasia or even encourage it for some groups may have nasia with a recent Supreme Court of Canada decis right has been
ion demonstrated, the burden of proof is
within this complex are the untoward effect of promoting suicide in other concerning ambivalent consent to medical upon the State
treat­ �o de nstrate that the infringement
cautionary, rather than groups...."15... ment.The euthanasia case unfolded as follow ";� has been legally

r - - - --
s: "In saved under section 1, because the law in ques
Apodictically
apodictically cenain.U... The definition of "terminal illness" is an elas­ February, Kevorkian assisted in the suicide of tion
Provably and necessarily true; Hugh is demonstrably justified in
incontrovertible. What specific slip­ tic matter, given to slippery slopes of its own. For G�le, 70, an emphysema patient who may, at the
last a free and democratic sod- Section 1
pery slope cauti o n s example, last year's Washington State initiative to mm�te, have changed his mind. According
to one ety....Properly understood J The section of the Canadian
might have been raised legalize "physician aid-in-dying" (assisted suicide and vers10n of the report that Kevorkian wrote, abou
t 45 sli pp er y s I ope rgum ems' Charter of Rights and
in the event that the Rodriguez case had been decided euthanasia) was to be restricted to the terminally ill. seconds after putting on the carbon-monoxide _ � Freed oms that confirms that the
mask cannot satisf y this require- J rights listed in that document are
in her favour? Brock has argued convincingly that However, "1-119 would have expanded the state's def­ Gale became flushed, agitated, saying Take it
off!: ment.They are cautionary in guaranteed, but also subject to
no important logical or ethical difference stands inition of'terminal condition' to include patients with Th� mask was immediately replaced with oxyg
en, nature, providing reasons to J reasonable limitations, allowing
between physician-assisted suicide and euthanasia; as long as six months to live and also those who were which helped calm him down.The patient wan
ted pause, to reconsider, to tern- �he gover,nment to abridge an
legalizing one should logically entail legalizing the not actually about to die, but in irreversible comas or to continue,' the report states.'After about 20 minu j ind1v1dual s Charter rights when
tes porize and to carefully weig
. h' compelling justificatio
other.12 .. .Using complicated technology, involving persistent vegetative states." 16 with nasal oxygen continuing, the mask was repla .
ced but bY the1r nature, they are n for doing
the collaboration of physicians and technical person­ All of the dissenting judgments expressed con­ over his_ nose and m uth, and he again pulled the Lso exists.
_ ? clip not knock-down, conclusory - -- -- - -----
nel, Rodriguez could have installed a machine that cern about the possibility that illegitimate pressure to �ff th� cn�ped tubing ...immediately after saying points.A slippery slope cons
would have provided her with a lethal injection after accede to suicide might be brought to bear. However, Take it offl once again, he fell into unconsciousne ideration is, by definition,
ss. speculative, and so it cannot play the role
a coded eye-blink; or, we could ...have the physician they failed to account for the fact that what actually The mask was then, left in place .... Heartbeat of satisfying
was the burden of proof required. And yet-
perform the injection.... It matters little whether counts as "illegitimate" pressure changes over time. undetectable about 3 minutes after last breath." and the point
18 must be repeated-it is agreed on all sides that
a command is given to a person or a machine pro­ This slippery slope phenomenon is already evident This would not, at this time, satisfy the requireme slip-
nt pery slope concerns are at the centre of
grammed by that person. in the Netherlands.John Keown describes a con­ that a request be unwavering; but would it not any decision
do so regarding _ change in the laws
Mclachlin j.writes: "lf the justification for help­ versation with Dr Herbert Cohen: "One of Holland's shortly after such requests became a commonly-accep respecting euthanasia
ted and assisted suicide.
ing someone to end life is established, l cannot accept leading practitioners of euthanasia told me that he part of medical practice? Compare this situation with
the What can be done to escape this jurisprudentia
that it matters whether the act is "passive"-the would be put in a very difficult situation if a patient Supreme Court of Canada decision regarding conse . l
nt to dilem ma? I believe the solution is simple .... The
withdrawal of support necessary to sustain life­ told him that he really felt a nuisance to his relatives medical treatment.During an angiogram, the appe
llant �ebat e must proceed in the public arena, in par
or "active-the provision of a means to permit a because they wanted to enjoy his estate. Asked if he Mrs Ciarlariello, began to spasm.After calming herse
lf ticular, thro ugh the political process.
person of sound mind to choose to end his or her would rule out euthanasia in such a case, he replied: she said, "Enough, no more, stop the test." Her neuro In regard to
lo­ those v1_ ews i_ which no answer is prob
life with dignity."13 The Chief Justice went one step 'I . ..think in the end I wouldn't. , .."' 17 gist assessed her and assured her that five more _ � ably right or
min­ wrong, m which expertise fails to reliably help, dem-
further in recognizing the equivalency of the two: Similar arguments can be made with respect to utes ��re require�. Th atient responded, "Plea
�� se go ocracies rely upon one procedure:
"One of McEachern C.j.'sconditions is that the act two other conditions stated by the dissentingJustices: ahead. The Coun s opm1on was that this consent discuss, debate,
was propagandize-and then, vote... .
of terminating the appellant's life be hers and not that the request for euthanasia or assisted suicide be acceptable.... At that point, the insistence that conse How far along
nt the path to euthanasia-for whom, with
anyone else's ...Why should she be prevented the firm and unwavering, and that it be provided by a to euthanasia be firm and unwavering would disso what safe-
lve, guards, under what circumstances-is
option of choosing suicide should her physical condi­ fully informed person of undoubted competence. for, as Mrs Ciarlariello's case demonstrates, the law society pre-
will pared to walk? ...What cost, in the
tion degenerate to the point where she is no longer These conditions are not self-interpreting. They not insist upon such conditions for consent to medi form of abuse, is
cal likely �o accompany this path, and is
even physically able to press a button or blow into a are, moreover, in large degree, social constructions, treatment.19_ .. the gain worth
the pnce? These questions are at the hear
tube? Surely it is in such circumstances that assist­ often understood as relative to accepted or expected Yet l believe the disse nters were corre ct in t of the
debate, and a democratic nation has only one
ance is required most. .. ."14 This, then, is the first choices.What the slippery slope reminds us is that excluding these slippery slope concerns from
their of addressing them.
means
slippery slope consequence: in spite of the fact that social expectations change over time, under pressure
Rodriguez's case was framed and understood as an of the previous choice.At present, for example, asking Study Questions
issue of physician-assisted suicide, had the dissent to be killed 1s an odd choice and might trigger search­
succeeded, physician-assisted euthanasia would ing questions about competence. Over time, how­
quickly have followed. ever, this rigour might well give way.It is not hard to l. What, according to Freedman, was Sue Rodriguez
's 3. H�� does Freedman argue that permitting assist
There are a number of other slippery slope envision a time when quite the reverse obtains, when question? Do you agree? ed
suicide leads to physician assisted euthanasia
an ill person who fails to ask to be killed is judged to 2. What is the distinction between empirical and ? Is
concerns, potentially consequent upon legaliza­ con­ he right?
tion of physician-assisted suicide.... Very recent be "in denial," and for that reason in need of therapy. �eptual versions of slippery slope arguments? Give an
evidence confirms the fear that heightened social The same holds concerning the unwavering instance of each as it pertains to the Rodriguez case.
visibility concerning death-dealing volitional acts of nature of the choice, something that is inevitably
1 56 CHAPTER 9 Assisted Suicide and Euthanasia
Downie and Sherwin: A Fem inist Exploration of Issues Around Assisted Death 1 57

Notes legal cases involving assisted death in Canada and the They conclude that:
l. (1993] 3 S.C.R. 5 19, (sub nom. Rodriguez v. British Columbia not apodictic, conclusively true, but rather more or less well United States have involved women . . . . Moreover,
(A.G.)) 107 D.L.R. (4th) 342 !hereinafter Rodriguez cited to grounded; and are always one among the many arguments the majority of Dr Kevorkian's "clients" have been "Gender profoundly affects judicial analysis of the
S.C.R.] that will need to be mounted concerning any given normative right-to-die cases. Judicial reasoning about men
2. Canadian Charter of Righ ts and Freedoms, Part I of the choice A (whether A be a policy or an action-the acceptance
women. 1 Further, women's wishes concerning the
of a norm or action in accordance with a norm) by an individ­ withholding and withdrawal of life-sustaining treat­ stresses the role of personal autonomy. Judicial rea­
Constitution Act, 1982, being Schedule B to the Canada Act
1982 (U.K.), 1982, c. 1 1 !hereinafter Charter]. ual. group, or society. Slippery-slope arguments are comprised ment have been treated differently than men's by soning about women examines the role ofcaregivers."7
3. Supra note 1 at 628. of or bolstered by numerous observations and generalizations. American courts. 2
4. Ibid. at 592-3. Socially, we note evidence of and e,cperiments upon conform­ . . . Because gender patterns have emerged
ity and the effect of social pressure upon individual moral
In Courts, Gender and The Right to Die, Steven Miles around assisted death, these patterns need to be
5. Ibid. at 601 .
6. Ibid. at 603. judgments; we note the phenomenon of immigrants, coming and Allison August examined all civil state appel­ explored to determine whether they are caused by
7. Ibid. at 566. to a new land with their independent values, assimilating to late-level "right-to-die" cases involving incompetent, gender oppression. If they are, then the practices and
8. This comment does not deal with another fundamental point of the host culture. Biologically. we note phenomena such as adult patients between 1976 and 1989.3 They found
consistency amongst the Justices. They all held in common the desensitization: the organism adjusting its own reactions to underlying assumptions giving rise to the patterns
accommodate its environment We note further how this may
slightly gender-patterned results . . . and seriously must be challenged .
view that Parliament had established a "right to suicide" when
it amended the Criminal Code so that attempting suicide was form a positive feedback loop, since the organism's environ­ gender-patterned reasoning. There were twenty-two
no longer a crime. This is not obviously true. Kamisar (supra ment is partly self-generated. Psychologically, we note the cases involving newly incompetent persons without
note 3) has noted that by far the more convincing reading of the phenomenon of cognitive dissonance and the normal reac­ written advance directives. In seventy-five per cent of A Feminist Analysis of the Issues
American legislative history is that suicide was decriminalized
in the strict sense - not "legalized; still less made the basis of
tion it evokes: discrepancies between a person's behavior and
his or her beliefs are as likely to result in an alteration of
the cases involving men but only fourteen per cent Around Assisted Death
[unher rights. By withdrawing the crime of attempted suicide belief as in a reform of behavior. H1storically, in retrospect­ of the cases involving women, the courts constructed We believe that Lhe principle of respect for autonomy
from the books, the legislators were simply acknowledging ively e,camining regimes of horror and human degradation, the preference for medical care from the memories establishes a strong prima facie case in favor of a per­
that no useful purpose could be gained by continuing to pros­ we note that there were early, small, incremental steps taken and insights of family and friends. In twelve per cent missive policy with respect to assisted suicide and
ecute for this act. None of the Justices in Rodriguez: attempted by members and institutions of society that permitted the later
any serious discussion of the legislative history surrounding holocaust to nakedly proceed (B, Freedman, "The Slippery­
of the cases involving men but forty-three per cent euthanasia. . . . 8 Therefore, we shift our attention to
the Canadian reform that resulted in the decriminalization of Slope Argument Reconstructed: Response to van der Burg" involving women, the decision was held to belong to arguments against a permissive policy. . . . We do not
attempted suicide. I am skeptical that Parliament, in decrimin­ (1 992) 3:4 J. Clinical Ethics 293 at 296-7) the family/guardian. In twelve per cent of the cases find these arguments persuasive, . . . yet they raise
alizing attempted suicide, contemplated the reconstruction of 12. D. Brock, "Voluntary Active Euthanasia" (1992) 22 2 Hastings involving men but twenty-one per cent involving special concerns when considered from a feminist
this decision, an acknowledgment of the limits of legal effect­ Center Rep. 10.
iveness, into a fertile source of further rights. I further believe 13. Justice Sopinka writes that "the active participation by one
women, the decision was held to be a medical matter. perspective . . . .
that the burden was upon the Justices to demonstrate to the individual in the death of another is tntrinsically morally and In zero percent of the cases involving men but twenty­
contrary; however, I will not pursue this issue further here. legally wrong . . . " (supra note I at 624). one per cent involving women, the decision was held Competence
9. Supra note I at 588-92. 14. Ibid. at 578-9 to belong to the health care institution.4 There were It is often argued that it is very difficult Lo assess the
10. lbid at 620-3. 15. (1993) 329:20 New England]. Med. 15/0.
11. (N]ormative behavior-accepting norms, or acting in accord­ 16. R. Carson, "Washington's 1-1 19" (1992) 22:2 Hastings Center
three cases involving incompetent persons wiLh writ­ compeLence of dying individuals; their capacity to
ance with expressed or une,cpressed norms-has conse­ Rep. 7 at 8 ten advance directives. The court rejected the living make autonomous decisions can be compromised by
quences and develops its own momentum. Because there are 17. "On Regulating Death" (1992) 22:2 Hastings Center Rep. 39 will of one of the women and accepted the living wills grief, fear of dying, illness, or by the treatments they
limits to human predictive capacity and rationality, the con­ at 41-42. of the man and one of the women. However, even in
18. N. Gibbs, "Death Giving" {Canadian} Time (31 May 1993) 44
are receiving. . . . It is true that pain, drugs, and dis­
geries of slippery slope arguments serve, not as a conclusive
basis for rejecting change, but as a warning flag concerning at 48.
the cases involving the acceptance of the living wills, ease can impair competence. However, . . . first, . . .
the possible effects of change. Slippery-slope arguments are 19. Ciarlariello v. Schacter, 11993] 2 S.C.R. 1 19, 100 DLR. (4th) 609. the courts required that a higher burden of proof be competence is not an all-or-nothing concept. . . . One
met for the woman than for the man.s may at any one time be competent to make some deci­
Through careful analysis of the reasoning . . . in
ii#i9§4 A Feminist Exploration of Issues Around Assisted Death the above cases Miles and August conclude that:
sions and not others. Even if an individual's compe­
tence is compromised by her condition, she might
Jocelyn Downie and Susan Sherwin I St. Louis University Public Law Review 1996; is: 303-30. be . . . competent to make a decision about the value
"[There are} four major differences in how courts or disvalue of continued existence to her. . . . Second,
speak of previously competent women's or men's
Introduction moral preferences. Thefirst difference is the courts'
the existence of some individuals who have been ren­
dered incompetent by pain, drugs, or disease does
. Policies on assisLed death . . . may have a sig- oppression can complicate decision-making around view that a man's opinions are rational and a
assisted death. _ . . not justify concluding that all individuals wilh similar
nihcanl negative and woman's remarks are unreflective, emotional, or pain, drugs, or disease are not competent . . . . Third,
Assisted death
disproportionate impact immature. Second, women's moral agency in rela­ it is possible for individuals who are competent to
Death that results from an intentional on women . . . . We sup­ tion to medical decisions is often not recognized.
act or omission of a second person. port a limned permis­ The Need for a Feminist Analysis Third, courts apply evidentiary standards differ­
anticipate future incompelence and set forth their
According to the authors, this wishes in advance directives . . . .
sive legislative policy, Policies and precedents on assisted death may have ently to evidence about men's and women's prefer­
includes assisted suicide, euthanasia, In addition, . . . if one wishes to use Lhe compe­
provided that it is sensi­ oppressive consequences for women . . . and gender ences. Fourth, life-support dependent men are seen
and withholding or withdrawing life­ tence argument againsl assisted suicide and eutha­
sustaining treatments. t ive and respon sive to patterns are emerging in the area of assisted death as subjected to medical assault; women are seen as nasia, one has to explain why it is relevant in assisted
the many ways in which that merit investigation. . . . First, almost all of the vulnerable to medical neglect."6 suicide and euthanasia but not in the withholding
Downie and Sherwin: A Feminist Exploration of Issues Around Assisted Death 159
Ui8 CHAPTER 9 Assisted Suicide and Euthanasia

choose to end their lives rather than bankrupt their Some people have no homes to return to or their homes interactions and those deriving from existing pat­
and withdrawal of life-sustaining treatment and the families in an effort to prolong a painful existence. are dangerous.. ..Not all homes have someone present terns of power, privilege, dominance, and oppression)
.
prov ision of life-shortening palliative treatment Criteria of voluntariness demand that such individ­ who can help to provide care.For example, while most influence the sort of self that a person becomes.
We do not believe that this can be accom plish ed.
uals be acting in accordance with their own values, elderly men have wives at home who can care for them, The exercise of autonomy involves the use of
Nevertheless, ... competency is of particular con­ not that they be acting in accordance with their own many elderly women are widowed and alone....We essential capacities and skills {e.g., self-knowledge,
cern ... since competency standards are typically self-interest, narrowly defined.... must not develop a model based on the resources avail­ self-direction, and self-esteem) which are products of
of
constructed around the para digm of members This problem may dissolve given a sensitive regu­ able to those who are greatly advantaged, without pay­ an agent's social experience and situation.12 Relational
the most dominant social groups, and they are often
9 latory scheme... . Further, ... the voluntariness ing careful attention to the needs and opportunities autonomy, then, is a capacity that is developed (and
biased against members of oppressed groups. ... argument applies as much to individuals consenting available to less privileged members of society. constrained) by social circumstances; it is exercised
Competence is often linked to ideals of rationality, to the withholding or withdrawal of life-sustaining Finally, this argument seems to ignore the well­ within relationships and social structures ....By rec­
but women are more likely than men to be seen as treatment or the provision of life-shortening palliative entrenched gendered division of labor which places ognizing how a person's position within an oppres­
irrational when they are perfectly rational. ...The treatment as it does to assisted suicide and eutha­ a disproportionate share of the burden of home care sive power structure can affect her ability to develop
very concept of rationality is usually constructed nasia. It does not block accepting the former so it on women.There are higher expectations on women the requisite skills for exercising autonomy effectively,
in opposition to the traits that are stereotypically should not block accepting the latter. than on men to provide such care, and those who do we can appreciate that autonomy is a product of per­
assigned to women (e.g., by requiring rational agents Nevertheless, there are reasons for feminists to are penalized in the workplace for having home care sonal resources and skills which are themselves, at
to be objective and emotionally distant from the be concerned about voluntariness requirements.... responsibilities.This is not per se a counter-argument least partly, a product of structural conditions.
effects of their actions).10 It is important to consider Women ...may be at particular risk of being manipu­ to the home care argument, but, rather, a caveat that A relational interpretation of autonomy can help
the criteria used to evaluate competency to eliminate lated into accepting early death rather than burdening if home care is increased without acknowledging and clarify how voluntariness standards can be adjusted
gender or other forms of bias that allow this standard others .... Part of gender socialization for women providing a remedy for these inequities, for example to account for oppression.Standard ...assessments
to be used to discriminate against the oppressed .... is towards self-sacrifice and self-abnegation....In respite care programs and employment protection , of whether a particular decision is autonomous ...
Oppression tends to rob its victims of some of the general, women are raised to be docile and compliant, the oppression of women will be increased .... ask whether there are any external forces directly
necessary traits for exercising autonomy well, such as to fit into others' life plans rather than to define their interfering with the choice. A relational approach
self-esteem and self-knowledge....Feminism sug- asks whether there are any external or internal forces
gests we .. .pay ...attention to ...ways in which
own.They are often deprived of the opportunity of Towards a Feminist Policy on directly or indirectly interfering with the choice....
controlling their reproductive, sexual, economic and
oppression can undermine a person's ability to make political lives. They may well be lacking in oppor­
Assisted Death By "internal forces interfering with choice" we mean
decisions in accordance with her own interests or val­ tunities to make autonomous, i.e., suitably voluntary, We propose that guidelines regarding practices of a woman's own desires that are grounded in the per­
­
ues....It seems, then, that there are reasons for believ choices for themselves, and, hence, not have had the assisted death be built around an ideal of relational ceptions of herself and her options that have been
ing that gender socialization reduc es wome n's levels
opportunity to develop autonomy skills. autonomy that grounds social policies in a recogni- oppressively constructed through socialization so
of competency for autonomous decision-making.... However, ... putting further restrictions on the tion of the difficulties that the woman does not accurately perceive herself
This, however, is not an argument against the use l ives of those already limited by oppressive social Relational autonomy of asserting auton­ or her options.By "forces indirectly interfering with
of competency criteria, nor for believing that those structures will neither reduce their oppression nor A feminist view of autonomy that omy in the face of choice," we mean forces that limit the set of options
who are oppressed are insufficiently competent to improve their autonomy skills. Rather, we need to
rejects an atomistic or highly oppression .... available to the individual.Examples: ...
make autonomous choices about assisted suicide or develop more sensitive measures for evaluating stan­
individualistic view of the self. Rather, A relational inter­ "External direct forces" - the power imbalance
euthanasia. It is, rather, an argument that suggests
it understands the person as an
dards of voluntariness and more democratic means essentially social being, whose pretation of auton­ between physicians and patients is particularly strong
the importance of developing oppression-sensitive of promoting the development of autonomy skills.... relationships with others play a role omy . . . rejects the between male physicians and female patients. As a
standards of competency.... in shaping the self and which may traditional liberal result, women may be more likely than men to be
foster or inhibit autonomous action. individualist con- pressured into decisions about assisted death by their
Home/Palliative Care
Voluntariness ception which views physicians.13
Some suggest that many individuals seek an early
The concern here is that individuals may not always the self solely as a rational, self-conscious, socially "External indirect forces" - more women than
death because they want to escape from the expense
be acting voluntarily when they make requests for unencumbered agent,11 in favor of understanding men are socially and economically disadvantaged, so
and alienation of a prolonged dying process in hospi­
assisted death. For example, it seems plausible ... the self as an essentially social being at least partly conditions near the end of life are more often worse
tal. They argue that most of the requests for assisted
that individuals will see themselves as being a burden shaped and modified within a web of interconnected for women than for men.14 As a result, women may
suicide and euthanasia would not be made if there
on their loved ones or on society, and feel pressured relationships....The various relationships in which have limited options with respect to pain control and
were more home and palliative care available.In their
into choosing an earlier death. Others may be vul­ a person finds herself all play a role in fostering or comfort care.Moreover, more women than men end
view, ...the number of ...individuals who cannot
nerable to financial or other sorts of coercive pres­ inhibiting her capacity for autonomous action.They up on their own with no one to care for them.15 As a
be helped by home or palliative care will become so
sures.... Although this is a legitimate concern, there are the context for activities constitutive of autonomy result, women may have limited options all of which
small that the harms of permitting assisted suicide
are several responses. (e.g., defining, questioning, revising, pursuing one's are unattractive to them.
and euthanasia will then outweigh the benefits....
First, the fact that an individual is concerned with interests and goals). Both interpersonal and political "Internal direct forces" - sexism and ageism
Home care is not always an option.Sometimes an
the well-being of others is not evidence that she is relationships (i.e., those having to do with personal cause women (especially older women) to have lower
indiv idual's condition requires hospitalization....
not acting voluntarily.People may quite voluntarily
CHAPTER 9 End of Chapter Resources 161
1 60 CHAPTER 9 Assisted Suicide and Euthanasia

However. while the conclusions drawn by Miles and August 13. "Inevitably, there 1s a built-in power imbalance in medical
self-esteem than men. This might lead them to see fighting against poverty, . . . for universal health care, are based on a small number of cases, they are not extrapola­ encounters: (relatively) healthy, well educated, affluent doc­
their lives as having less value and to request assisted and . . . for more effective and available palliative and tions from data on a small subset of a large set of cases. The tors provide services to patients who are typically ill and
_
death more readily than men. comfort care; determinmg whether (and, if so, why) twenty-five cases discussed in the article are air the cases, and frightened, and. often, are also poor, and lacking in educa­
members of oppressed groups are disproportionately so their conclusions about what the courts have been doing are tion and social authonty. This general difference in power
"Internal indirect forces" - since there is so much not vulnerable to sample size criticisms between patients and physicians is further exacerbated by the
seeking assisted deaths; and improving respect for
legal regulation of women's reproduction, women are 4. Ibid. at 86. �act t �at, most common ly, the patient is female and the phys­
women's bodily integrity.
more used to having less importance attached to, and 5. Ibid. at 91 . ician 1s male. ln fact, according to nearly all of the standard
At a micro level, courts and health care profes­ 6. Ibid. at 87.
more restrictions placed upon, their bodily integrity 7. Ibid. at 91.
dichotomies supporting dominance in our culture-gender,
sionals should try to remove external direct forces, class, race. abihty status-odds are that if there is a difference
than men. As a result, they may believe that express­ 8. We should acknowledge here that autonomy is a concept about �etween _ the affiliations of physician and patient, the phys-
increase the options available to the woman so as to
ing resistance to treatment that they do not want is which many feminists have expressed serious reservations. 1c1an 1s likely to fall on the dominant side of that distinction
remove external indirect forces, and assist the woman
not an option. . . . We share many of these reservations but do not believe that and the patient on the subordinate side." Meyers p. I .
to reconstruct her perceptions to remove the direct and the solution to the problems with autonomy is to abandon 14. "ln 1 9 93, women over 65 had a median annual income of
Implica tions of a relation al interpr etation of the concept. Rather, we believe that the solution is to recon­
indirect internal forces compromising her freedom. $8,499 - 57 percent of the $14,983 median income of older
autonomy for a permissive policy for assisted death: ceptuali:ze autonomy. Much more is said about this feminist men." Tamar Lewin, Income Gap For Sexes is Seen Wider in
When members of oppressed groups express a desire
With regard to competence, when confronted with a reconceptualization of autonomy in section V of this paper. Retirement, N. Y. Times, Apr. 26. 1995, at Al 9 .
for assisted death, they should be helped to review and
request for an assisted death, courts and health care 9. See Miles & August. 15. We are not concerned here with the simple biological fact
evaluate their choices and be given non-directive coun­ 10. See generally Genevieve Lloyd, The Man of Reason: 'Male" and
professionals should be careful not to assume that "Female" in Western Philosophy. (Minneapolis; University of
that men die younger than women do and hence the bio­
selling to ensure that their decisions are not grounded logical component of a complete explanation for the fact that
women are not rational .16 They should take care not Minnesota Press, 1 984). a greater percentage of women than men are single when they
in low self-esteem which derives from their oppressed
to mistakenly think a woman is incompetent because 1I. See, e.g., Immanuel Kant, Foundations of the Metaphysics of are old. Rather, we are concerned with the societal reasons for
status or expl01tation . . . . It should further be ensured
they believe that women are less competent than men Morals and What is Enlightenment? (Lewis White Beck trans a greater percentage of women than men bemg single when
that death is indeed their preference and that they are
or because they fail to understand alternative ways of
Bobbs-Merrill Company, 1959) (1785):John Locke, An Essa; they are old. For example, society has different expectat ions
not being coerced into this option because they l�ck Conce rning Human Understanding (Peter H . Nidditch ed., regarding remarriage for men and women: it 1s more widely
reasoning (commonly associated with women) and Ward, Lock & Co. , 1982) (1883): John Rawls, A Theory of accepted that widowers or divorced men 'need• 10 remarry
the resources to obtain appropriate health care. If their
assume incompetence in the face of such reason­ Justice (1 97 1). while widows or divorced women do not, and that older wid­
condition can be relieved by health care and if they
ing. . . In cases in which women are not sufficiently 12. See generally Diana T. Meyers, Self. Society and Personal owers or divorced men will marry younger women while older
would prefer to receive health care, then efforts should Choice. (New York: Columbia University Press. 1989) for a
rational or competent, courts and health care profes­
widows or divorced women will not marry younger men.
be made to ensure access to care. full discussion of autonomy skills 16. See Miles &: August. see also Meyers.
sionals should try to help them become rational and
Once a best effort has been made at all of this,
to improve competence . . . .
then the woman's wishes should be respected no mat­
With regard to volunta riness, at a macro level.
ter what others may think of the consequences for her
courts , policy- maker s, and health care provid ers
and even if her decision seems to be in response to
should strive to remove external direct forces, increase
oppressive social conditions . . . . We do not believe - -

the options available to women so as to remove exter­ Chapter Study Questions


that the fight against oppression should be conducted
nal indirect forces, and remove the sources of direct
at the expense of individual women; we should fight
and indirect internal forces. This means, for example: 1. The Royal Society of Canada Expert Panel use Canada Expert Panel argues that slippery slope
for women but not fight the women . . . .
putting i n place patient empowerment program s; competency as an example of a sorites para­ considerations are best thought of as a tool to
dox and arg ues that it can be responded to. shape effective regulation. Freedman argues that
Freedman gives at least two other examp les of they highlight the need for further pu blic debate.
key terms that are in effect open to sorites para­ Who is right?
Study Questions doxes. What are they? Can they be responded to 3. Compare and contrast the use of autonomy
in the same way? in the argumentation of the Royal Society of
l. Why, according to the authors, is a feminist analy­ 3. What is relational autonomy? How is it reflected in 2 . Both the Royal Society of Canada Expert Panel Canada Expert Panel with relational autonomy in
sis of assisted suicide and voluntary euthanasia the authors' policy approach to assisted suicide and and Freedman consider the implications of slip­ Downie and Sherwin. Can the policy im plications
required? Are their reasons convincing? voluntary euthanasia? pery slope arguments for assisted suicide and of these two views be reconciled?
2. Why is voluntariness a worry in assisted suicide and euthanasia in Canada. The Royal Society of
voluntary euthanasia? What is the authors' response
to this concern?
Critical Analysis
Consider the following excerpt from the Royal Society �n argument that practicing assisted dying on
of Canada Expert Panel: mcompetentpeople is unavoidable. The argument
Notes takes the form ofa sorites paradox: for every com­
1. Nancy j. Osgood & Susan A. Eisenhandler, Gender and 2. Steven H. Miles & Allison August, Courts, Gender and "The 'The conceptual slippery slope argument against petent person, there will be one just slightly less '
Assisted and Acquiescent Suicide: A Suicidologist's Perspective, Right to Die", 18 Law, Med. & Health Care 85 (1990); pp. 85-95.
3. Ibid. p. 85 n.3 It might be argued that Miles and August's
assisted suicide and voluntary euthanasia takes competent, where the difference between the two
9 Issues L. & Med. 361 (19 9 4), p. 362. At least sixty-three per
sample size was too small to justify drawing conclusions. the ambiguity of the concept as the premise of hardly seems significant enough to ground the
cent of Dr Kevorkian's "clients" have been women.
162 CHAPTER 9 Assisted Suicide and Euthanasia

claim that one is competent whereas the other is Outline this argument in your own words, paying
not But then, there will be a person just slightly particular attention to the premises that are relied on
less competent than the second, and then another to support the main conclusion. Choose one of the
just slightly less competent than the third, and premises for evaluation. Try to think of at least one
quickly, medically assisted dying is being prac­ objection to this premise.
ticed on patients of whom it would be vety difficult
indeed to claim that they are competent."

__ c:ase �tudy Defining Death


Assisted suicide or voluntary euthanasia are legally per­ keep on living when I am already 50? I am not religious,

T
mitted in seven places in the world: Belgium, Luxemburg, but everything is so senseless, so empty, so useless.
he t i�s of s st�d suicide is not the only philosoph
; ical problem connected with death
the Netherlands, Switzerland, and three states in the The grief, the despair, it is all so terrible.•
an; ymg; � e�mng death is a moral problem in
and of itself. This chapter addresses
United States of America (Montana, Oregon, and Dr Chabot tried to talk her out of the decision, but
some very hard philosophical and practical questions.
What counts as "death'tt Wh .
Washington State). The longest experience with both she remained steadfast. He ultimately provided her
practices comes from the Netherlands, where assisted with a prescription for sleeping tablets, and she took � p rs on <lea�? What ar the physical and medical
� chara cteristics that signify death t� the;:��
suicide and euthanasia have been permitted since 1973 them and died. When details of the case came to light, teat om mumty and society �t la rge? The papers in this
�n t chapter address some of these questions ·
he course of watching medical dramas on telev
ision , you wt·11 often see a team of
in restrictive cases. In the Netherlands a physician may Or Chabot was prosecuted for violating the regulations
surrounding permissible assisted suicide and eutha­
doc tors trym · .
g to reviv
provide a patient with the means to take his or her own
e someone whose heart has stopp
ed. The team will work away and
t hen the h ead doctor will say "L
life or inject the patient with a lethal cocktail of drugs nasia. However, on 21 April 1993, a Dutch court ruled
' et's call it"· She wt·11 then announce a time .
only if the patient is terminally ill, in unbearable pain, and that Dr Chabot was justified in helping the 50-year-old
are a begmm . .n philos ophy s uden of death If you
�, t , you might well wond er what
repeatedly expresses the wish to die. woman end her life. The court thereby affirmed the use _ � they are up to. "Call it'"
yo �1 ht as�. Surely death IS a fact. The pat ient
� _ is either dead or alive. Which is it?" This
�m: ,gutty ra1_ses quest10ns concerning how death
Hilly Bosscher was a 50-year-old woman who was of assisted suicide for people who are not terminally ill
divorced from a man she described as an abusive alco­ but who are suffering from mental illness.
_ is determined. If the docto r is on! a I -
mg set 0: C Itena , does that make her nothing more than an umpire
holic. She approached Dutch psychiatrist Dr Boudewijn
;e
us ee� .somewha� uncomfortable as the do ctor's st:Ur
or referee? Thi:
judgment alone canno t det ermin e
d
:�
Chabot and asked him to assist in her suicide. Ms 1. Was Hilly Bosscher's choice autonomous? Would
e er a p ttent has dted. Surely the re a re universal
truths about death that are observable
Bosscher was not dying of cancer; she did not have a

a�d _nowa :le by �ealth care professionals and the
the Royal Society of Canada Expert Panel and
terminal illness. Rather, she was chronically depressed Downie and Sherwin agree? Why? public. If this is the case, then are the
after the deaths of her sons. One son had died of can­ cmena they a re usmg the c orrect ones in light of
2, Is this case evidence of a slippery slope when what it means for a person (as opposed to
cer, and the other committed suicide. She clearly and
assisted suicide is permitted? What kind of slip­ a squirrel or a patch of moss) to be dead?
repeatedly expressed the wish to die. She said, 'I long
The fi rst.. aper �ntroduces the range of views held
when it comes to definin death for
· In PWhat ts D eath?: A Crisis of Criteria,tt Loui
for the day that I do not have to stand at their grave any­ pery slope?
more, but will be allowed to lie there forever between 3, What does this case say about what should be �;:::� : s Pojman presents four � efinitions
e
my darlings.• She went on to say ask "Why do I have to done in Canada?
1. the depar ture of the soul from the b o dy;
2. the irrev ersible cessation of cardiovascular pulmonary
Further Reading function,
3. whole brain death; and
Canadian Broadcasting Corporation. Dying on her own Royal Society of Canada. End of life deci­ 4. neoconical (or higher) brai n death
terms [Internet]. Available from: http://www.cbc. sion making [I nternet]. November 2011. .
In Po man's a r ticle, we see how death is connected
to philos ophical questions about the
��t� re o / ersonhood. If people were just like othe
ca/archives/categories/politics/rights-freedoms/ Available from: http://www.rsc.ca/documents/
r animals, t hen the second or third
sue-rodriguez-and-the-right-to-die-debate/dying­ RSCEndoflifeReport2011_EN_Formatted_FINAL.

m1� 1on f eath would seem to be adequate. Ho weve def
� r, the thought that personhood involve�
on-her-own-terms.html. Date Accessed: 28 May pdf. Date Accessed 28 May 2012.
ratt�nah y and consc10us awareness pushes some
� _ philosophers to argue that without hig her
2012. Special Senate Committee on Euthanasia and Assisted
bram activity, a person can not be said to be alive' in spite of the ·
fact that h'ts hean commue
Government of Canada. The Rodriguez Case: a review Suicide. Of life and death. Final report [Internet].
of the Supreme Court of Canada decision on Ottawa: Special Senate Committee on Euthanasia to beat• PoJima n •s arttc
· Ie makes c1ea r the difficulties p osed by philo s
and Assisted Suicide; 1995. Available from: http:// the atu re of personho o d, on the one hand, and sop hical uestions ab out
� by the increasing use ofiife- rolon in
assisted suicide [Internet]. Prepared by Margaret
Smith, Law and Government Division (October www.parl.gc.ca/Content/SEN/Committee/351/ c ol og , on the other. A further comp
licati ng factor is the need for cl�ar cri!ri�
:;�;��:� � �
1993). Available from: http://dsp-psd.pwgsc. euth/rep/lad-e.htm. Date Accessed: 28 May 2012. g eath 1o r t he pu r poses of organ donation.
gc.ca/Collection-R/LoPBdP/BP/bp349-e.htm. Sumner LW. Assisted death: a study in ethics and law. . The second ar ticle, by Roland Puccetti, is a direc
t and forceful argument for one of the
Date Accessed: 28 May 2012. New York: Oxford University Press; 2011. views presented by Pojman , namely, that death
occurs with cessation of functioning in the

J
13
CHAPTER 13 What is Disease
? 213
In the first ar ticle, Christopher Boo
rse seeks to provide an account of
to which d iseases are both real and disease, according
obj ective. Boorse argues against no
that disease a nd value-a socioc r m ativism, the view
ultural feature-are inextricably
the case, he argues, t hat "to call intertwined. It can't b e
a condition unhealth is at least
bec ause there exist diseases that ar y in part to conde mn it,"
e of indeterminate valu
that are positively valued (such as e (such as infertility) a nd ot hers
the flat feet of an unwill ing milita
place of normativism, he provides r y conscript). In the
a n obje ctive view of dis
a e cco rdin g to which the sci­
What is Disease?
ence of disease (or "me e s a
dical theory," as he calls it) is con
astronomy Disease is sim tinuous with biol og , physics, or
. p ly a deviation from the normal fun y
body, and to conclude that a conditi ctioning of a part of the human
on is a disease does not impl tha
of ethics and value (or broader so y t it is "bad." Questions
ciocul tural features) are not relevan

I
but they do apply to medical pra t to medical theory,
ctice and what he ca lls "illness.''
n thi s chapter, we explore the question·. "What is disease?" At first gl ance, this might seem Boorse, is a disease that is both und An illn ess, according to
ffl . esirable and implies tha
t the per
like a simple . n . There are numerous a "icuons, such as multiple sclerosis, coronary
questio ing of special trea tme nt and has d son wit h it is deserv­
iminished moral accountability. Thu
artery d isease, or breast cancer, that no on� couId reasonably doubt count as diseases. Upon counts as an illnes s may vary from s, even though what
. one time or place to another, wha
reflection, t hough , m a surpnSm · · g number of mstances 1·t may be unclear whether a cond ition remains an unvarying fact. t counts as a disease
ough t to count as a disease._ �hould states t h e arly universal such as dental caries, coun t In the second a rticle , Ian Hackin
g take s issue with the strict obj
as diseases? Wh at of condmon s that ar� m:r:; �:k factors for �he development of disease, disease as articul ated by Boors e. ectiv e account of
Disease categories, he argues, a re
such as mild hype rtensi• on, � ns · k factor 1or card�1ovasc uJar d1·sease7· Or what of bodily features e sting and important w complicate d in inte r­
. ays, a nd interac t with
that exist on a continuum, hke height? When precise . ly-if ever-does being too sh ort or too an anti-rea list whe n it comes to dis sociocultural factors. Hacking is
surely not
ease , but , rather, he s eeks
tall become a disease? both ideas [realism and so ci al constr "to create a space in which
uction] can be developed withou
A disease may be defined as a cond"1t10n . that_ impairs t he normal functioning of the ate confront ation." He takes issue t too much immedi­
k with the view of diseases as simply
human body. We commonIy t hm · of disease as a d1sva lue d st at e-one that we wou ld rat her calls) indifferent kinds, that is, as natural or (what he
. . . classifications in which the classific
a vmd, if poss1"ble -b ecause it may be as sociated wt" th p a1·n or d iscomfort. We also think of not in teract with the thing classifie at ion schema does
. d. This vie w misses the interpl a
di sea ses as real. Indeed , when someone 1s th ought t o be falsely displaying the symptom s of ca tion of a disease and its m a nife y between the cl assifi­
. . . stations- an understanding of dis
a d isea se, It may be com me nt e d t hat It ts . "a II m h1s " he ad"· But whether a par ticular cond 1- " kind. Eve n if schizophre ni a is u ease as an in te ra ctive
l timately reduced to a
tion is characterized as a disease ca� var co�s1. de abl from time to time and from p lace types, the methods used to treat single or sm a ll set of biologic al
it and the broad social understan
to place. Being overweight was con s1dere� a sign o; !a1th and prosperity.in late 19t h and t o be s chizophren ic inte
ract wit h a nd chang
ding of what it means
e bot h the expressio n of
early 20t h cen t ury North Am�rica ; t� day, anyone w:h a body mass i ndex greater than 30 who counts as being afflicted wi the disease and ev en
t t h it. Thus, H acking pro
is diagnosecl as "obese." The d1agnos1s of ast h ma, hay r1'ev er, and nasal allergies vanes con- like schizophrenia according to whi vid es us wit h a view of diseases
. ch they ar e real, but in which the
siderably from one coun� ry to t�e next, wit h h. h at es in t he United St ates and t he Um. ted place. Indeed , for Hacking, the y va ry by time and
dynamics of the interactions bet
Kingdom, and low rates m contm��tal Europe · �h ;variability of d isease cla ssification raises expression is precisel ween classification and
y "where the action is."
the question whether t hese cond 1t1ons are rea1 or "f I they are socia lly con st ructed , th at is, a In the third anicle,Joan Callahan
examines whether men
function of sociocultural factors. a disease, and, if so, whether it req opause ought to be considered
. · uires t re atme nt with exogenous estr
Wh at d1fr_rerence does It make whether a cond"mon . counts as a disease'· Consider a IO-year- is a challeng i ng case precisely bec oge n. M e nopause
. ause it is a normal par t
of th fem
old boy who ts frequently restless an d ag1. tat d and who h as difficulty paying attention m the a typical l ifespan, a l l
women will go through a p eriod
e a le life span. Assuming
classroom. What is the difference between �_ ab II" g h" as "fidgety" on the one hand, or as stop pro d ucing eggs, a nd in whi of cha ng e in whi ch th eir ovaries
"suffering from at tent ion defic t hyperac ch sym ptoms from fluctuating hor
i �-m d l�ADHD)" on the other7 One import­ promin ent. It seems odd , of cours mone levels may be
t;:? �:�� �; t e, to sug gest that a par
t of the lives of all women shou
a nt d ifferen ce rel ates to blame and mor o il . I m ay be appropriat� t o discipline be considered a disease. As Ca ld
: � l lah a n e xplains, th oug
h, bo t h the availability of exogen­
a boy who is merely fidget�, b ut a b hos behaviour is t he result of a d isease deserves ous estrogen to rep lace flagging
estrogen le vels and prevailing med
sy mpat hy rather than pumsh me� t . l�other difference is fo und in the scop e of appropriate women drove the medic alization ical att itudes towards
of menopause. She correctly obs
solutions. Viewed as a m atter of ill fi t bet"".een the requirement s of the cl assroom and the for treatment have changed and erves that motivations
that a ''rhetoric of retaining femin
behaviour of m any boys , '!"e migh t seek to mcrease h 1·s phys1·cal activity and diminish time a rhetor ic of maint aining health inity has e volved into
." Estrogen replaceme nt c ame to
s pen t sittin g at a desk dunng the school da Y _ But view ed as a disease , we might conclude that health treatment, one that would be seen as a preventive
. . · diminish the chances of developin
p rescnbmg Rit. a1m · ts
· the appropri ate soluuon t o the boy's behaviour · Th us ' the reperc us- and osteoporosis. Callahan is sk g he ar t disease , stroke,
.. . . eptical of these pur ported
sions of whet her we concept ual ize a cond1t 1on as a dtsease go well beyond mere ly attachmg Since the publication of her artic hea lth ben e fits-and righ t ly so.
le , the use of est rogen has been pro
one l abel or an other. of heart attack and stroke in w ven to increase the risk
omen, and its use has
dramatic ally diminished. While for
Boorse: On the Distinction Between Disease and Illness 215

214 CHAPTER 13 wtiat IS Disease?


strong and weak.Strong normativism will be the view with theory in biology and the other natural sciences,
ptoms are severe.
m ost women the symptoms of
menopause are mild, for a minority the sym that health judgments are pure evaluations without and I believe it to be value-free.
left with a difficult choi ce betw een the ability to
Those who are severely afflicted are now drug 's potentially
-- - - - - -- -- � descriptive meaning; The difference between the two frameworks emer­
r m with estrogen versus th e
eliminate those symptoms in the short-te w e ak nor m ativism ges most clearly in the distinct ion betwe en disease
Descriptive meaning
es. A statement about the state of the a 1 lows such judg- and illness. It is disease, the theoretical concept, that
serious long-term consequenc world that is value-free, e.g., "there me nts a de scriptive applies indifferently to organisms of all species.That
is a coffee cup on the desk in front
of m� as well as a normative is because, as we shall see, it is to be analyzed in
__ _ __ __ _ _j component.2 ... biological rather than ethical ter ms.The point is that
Eve n weak normativism runs int o counte r­ illnesses are merely a subclass of diseases, namely.
eas e and Illn ess
C•UiW On the Distinction BetweenirsDis examples within physiological medicine.It is obv ious those diseases that have certain normative features
Public Affa 1975; 5.1: 49-68. that a disease may be on balance desirable, as with reflected in the ins titutions of medical practice.An
Christopher Boorse I Philosophy and the flat feet of a draftee or the mild infection produced illness must be, first , a reasonably serious disease with

, . . With fe w exce p­ Normativi


sm about Health by inoculation. It might be suggested in response that
diseas e s must at any rate be prima facie undesirable.
incapacitating effects that make it undesirable....
Secondly, to call a disease an illness is to v iew its
by say­
Evaluative notion tion s , clin icia ns and lt is safe to begin any dis cussion of health The trouble with this suggestion is that it is obscure. owner as deserv ing special treatment and diminished
s are
A concept that implies a judgment
phil osop h rs are agr eed ing that he alth is normalit y, since t he term Consider the case of a disease that has infertility as its moral accountability....There are, then, two senses
about the value or worth of a thing
e
e xts.But this re mark
heal h is an esse n­ in terchangeable in clinical cont
or activity.Here it Is reierr ing to a t hat t
the sole important effect.In what sense is infertility prima of "health." In one sense it is a theoretical notion . the
of healt h acco rding to which the ially eval uati ve noti on. prov ides no analysis of health until one specifies
view facie undesirable? Considered in abstraction from the opposite of "disease." In another s ense it is a practical
ed.The most obvious proposal, that they
t
goodness of health and the badness According t o this con­ norms involv reco gniz d to actual effects of re production on human beings, it or mixed ethical notion, the opposite of "illness."3
of disease are built into the concepts. are pure statistical means, is widely
e
s ensus v iew, a valu e- is hard to see how infertility is either desirable or Let us now examine the relation between these two
On the one
free science of health is be erroneous. Stat istic al mean undesirable. Possibly those who see it as prima facie concepts m ore closely.. ..
i m po ssible. This thesis hand, many deviatio ns The average; the sum of the undesirable assume that most people want to be able
Valu e-fr-
ge -e.g. values for each member of a
Not involving judgments about l believe to be entirely from the avera to hav e more childre n.But the corollary of this pos ­
the value or worth of a thing; mistaken. 1 shall argue in unusual streng
th or v ital sample space divided by the
ition will be that writers of medical texts must do Disease and Illness
evalu ative. capa city or eye color -are number of members.
not this essay that it rests on an empirical sur vey of human preferences to be sure What is the theoretical notion of a disease? An admir­
. On the
a confusion between the not unhealthy ome disea se or that a condition is a disease.No such considerations able explanation of clinical normality was given thirty
tically everyone has
theoretical and the prac­ other hand, prac
s
ase uch as seem to enter into human physiological research.... years ago by C. Daly King: "The normal ...is object­
Disease are also particular dise s s
A deviation from the normal tical senses of "health." or other, and there n arly I suggest that normativism's current prevalence is ively, and properly, to be defined as that which func­
minor lung irritation that are e
functioning of a part of the human in other words, between tooth decay and fore n i largely the result of two quite tractable causes. One is tions in accordance wuh its design.''4 The root idea
universal.Since statistical nor mality is there
e
body. For the author, 'disease' is a dise ase and illnt>�s. , he lack of a plausibl e descripu ve analysis; the other of this account is that the normal is the natural.The
mality
ther necessary nor sufficie nt for clinical nor
t
concept that belongs to the domain Two presu ppo sitions state of an organism is theoretically healthy. i.e. free of
of medical theory and is value-free. is a confusion between theoretical and practical uses
the following view about the norms
, of m y who le disc us- most writers take of the heal h vocabulary. The required descripti ve disease, insofar as its mode of funcuomng confor ms
they must be determmed , in whole
t
sion should be noted at of health: that analysis I shall try to sketch in the next section. As to the natural de sign of that kind of organism....
acts of evaluation. More precisely, the
Illness the outset. The firs t is or in part, by healt h inclu de for the second cause, one should always rem ember The crucial e lement in the idea of a biological
A subset of disease; a disease that substant ive: .. . I shal l
orthodox view is that all judgments of that a dual commitment to theory and practice 1s one design is the notion of a natural function . . ..A
is both undesirable and implies that as sume that t he ide a of valu e judgments as part
of he features that distinguish a clinical discipline. function in the biologist 's � - _
the person with it is deserving of
t
to be ana­ of their meamng.To call a Normat of health according to
ivism
has dimin ished heal th ough t Unlike chemists or astronomers, physicians and sense is nothing but a s tan- Function
special treatment and enc e to
view
condition unhealthy 1s at The h health is an essentially A causal contribution to one
moral acco untab ility (e. g.,may take a lyze d by refer whic p sychotherapi sts are professionally engaged in prac­ dard causal contribution to a
emn
missed examination without penalty). physiological m e dicine least in part to cond evaluative notion; saying what tical judgments about how certain people ought to
of the goals pursued by an
goal actually pursued by the organ sm by one of ,ts systems
ssible counts as 'health" or 'disease•
For the author, 'illness' belongs to alone.1 ...The other pre­ it; hence it is impo be treated. It would not be surprising if the terms in organism.5 Organism s are or subsystems. For nstance, the
the domain of medical practice and s upp osition of my dis ­ t o de fine health in non unavoidab y involves a judgment vast assemblages of systems funct on of the eye is to provide
. I shall as to whether a particular state is which such practical judgments are formulated have
is, therefore, an evaluative notion. cussion is terminological. evaluative terms valued or disval ued. normative content. ... and subsystems which, in the organism with accurate visual
from refer to this orthodox
For convenience in distinguishing theore tical But behind this conceptual frame work of medical most members of a species, representations of the world.
tech­ view as normativism. This, n turn, is important for
practical uses of "health," I shall adhere to the practice stands an autonomous framework of medical work together harmoniously
as " foun d in tex tbooks of medical Normativism has many varieties, which are often navigating efficiently from one
in such a way as to achieve place to another and recognizing
nical u age of "dise the clin­ the ory. a body of doctrine that descnbes the func­
not clearly distmguished from one another by
s e
textb ooks "di ease " is simply syn ­ a hierarchy of goals. Cells dangers 1n the env ronment.
theory. In such s
part my tioning of a healthy body, classifies various devia­
•·unh althy cond ition ." R e aders who icians who espouse them... , For the most are goal-directed toward 1
ony mous with all ver­ tions from such functioning as diseases, predicts their
arguments against normativism will apply to
e
e the muc h narr ower ordi nary usage
metabolism , elimination, and mitosis; the heart is
wish to pre serv ever, be useful to behavior under various forms of treatme nt, etc.This
retically sions indiscriminately. It will, how
of"disease" should therefore substitute "theo ativist posi tions into the oretical corpus looks in ev e ry way continuous goal-directed toward supplying the re st of the body
make a minimal division of norm
unhealthy condition" throughout.
11
218 CHAPTER 13 I/I/hat is Disease?
Boorse: On the Distinction Between Dise
ase and Illness 217
with blood; and the whole organism is goal-directed organization of the species, then in calling tooth normality that defines it is usually wor
both to particular activities like eating and moving decay a disease we are saying that it is not si mply in th having. In because the term "ill"
the first place, most people do wan does have a negative evalua­
around and to higher-level goals such as survival and the nature of the species-and we say this because t to pursue the tion built into it.
goals with respect to which physiol Here again a comparison between
reproduction .... The single unifying property of all we think of it as mainly due to environmental causes. ogical functions health and other
are isolated. Not only do we want properties will be helpful. Disease
recognized diseases of plants and animals appears to In general, deficiencies in the functional efficiency of to surv ive and and illness are rela
reproduce, but we also want to engage ted somewhat as are low intelli­
be this: that they interfere with one or more functions the body are diseases when they are unnatural, and in those par­ gence and stupidity.
ticular activities, such as eating and Sometimes the presumption that
typically performed within members of the species. they may be unnatural either by being atypical or by sex, by which intelligence is desirab
these goals are typical ly achieved. le wi ll fail, as in a discussion
The account of health thus suggested is in one sense being attributable mainly to the action of a hostile In the second of qualifications for
place-and this is surely the main reas a menial job such as washing
thoroughly Platonic.The health of an organism consists environment. If this explanation is accepted,7 then on the value dishes or assembling
of physical health seems indisputable- auto parts. In such a context a
in the performance by each part of its natural function. the functional account simultaneously avoids the pit­ physiological person oflow intellige
functions tend to contribute to all man nce is unlikely to be described
And as Plato also saw, one falls of statistical normality and also frees the idea of ner of activnies as stupid .... And
neutrally.Whether it is desirable for sometimes the presumption that
of the most interesting theoretical health of all normative content. one's heart to diseases are undesir
Platonic
pump, one's stomach to digest, or one able will fail, as with alcoholic
Referring to the philosophy of Plato features of the analysis Theoretical health now turns out to be strictly 's kidneys to intoxication or mild
eliminate, hardly depends at all on wha rubella intentionally contracted.
(434-348 BCE), a Greek philosopher t one wants to Here the term "illn
is that it applies without analogous to the mechanical condition of an artifact. do. It follows tha t essentially all serious ess" is
famous for his theory of Forms,
according to which non-material alteration to mental health Despite appearances, "perfect mechanical condition"
as long as there are stan­ in, say, a 1965 Volkswagen is a descriptive notion.
diseases will satisfy the first requirem
physiological unlikely to appear desp
ent ofan illness, the pre sen ce of
I
ite Rubel;;- - -- -
--
abstract ideas, and not the material namely, undesirability for its bearer. dise ase . German measles; a viral illness
world known to us through the senses, dard mental functions. Such an artifact is in perfect mechanical condition This explanation of the fit between med One concept of each pair is characterized by fever, rash,
have the highest form of reality. In another way, however, when it conforms in all respects to the designer's ical theory descriptive; the other head ache, and swollen glands.
and medical practice has the virtue of add s
the class i cal heritage detailed specifications. Normative interests play a reminding us to the first evaluati The illness is usually self-limited
that health, though an important valu ve con- in children and adults, but can
is misleading, for it seems clear that biological func­ crucial role, of course, in the initial choice.of the e, is concep­ tent, and so may be
tually a very limited one.Health is not with- be particularly dangerous in
tion statements are descriptive rather than normative design. But what the Volkswagen design actually is uncondition­ held where the first
ally worth promoting, nor is what is wor applies. pregnant women. If a woman is
claims.6 Physiologists obtain their functional doctrines is an empirical matter by the time production begins. th promoting If we supplement this infected before the 20th week
necessarily health. Although mental-h
without at any stage having to answer such questions Thenceforward a car may be in perfect condition ealth writers condition of undesir of pregnancy, the virus can pass
are especially prone to ignore these poin abil ty
ts, even the wit h two further nor into the fetus, poss·bry leading
i
as, "what is the function of a man?" Or to explicate «a regardless of whether the design is good or bad. If one constitution of the World Health Organiz ma-
ation seems tJve conditions, I beli to senous defects of the heart,
good man" on the analogy of "a good knife." Functions replaces its stock carburetor with a hi gh-performance to embody a similar confusion: "Health eve brain, eyes, or ears.
are not attributed in this context to the whole organism part, one may well produce a better car, but one does 1s a state of we have the beginning
- - __ l of a - - -- -- -- ----
at all, but only to its parts, and the functions of a part not produce a Volkswagen in better mechanical con­ complete physical, plausible ana -­
lysis of "illness." A disease is an illne
are its causal contributions to empirically given goals. dition.... Perfect working order is a matter not of
World Health Organization
mental, and social only if it is seri ss
Established in 1948 and based ous enough to be incapacitating, and
What goals a type of organism in fact pursues, and by the worth of the product but of the conformity of the in Geneva, Switzerland, it is the j well-being, and not therefore is: (1) undesirable for its bea
merely the absence special treatme rer; {2) a title to
what functions it pursues them, can be decided without process to a fixed design. In the case of organisms, entity within the United Nations nt; and (3) a valid excuse for normal
that coordinates international public j of disease or infirm­ criticizable beh ly
considering the value of pursuing them.Consequently of course, the ideal of health must be determined by aviour. The motivation for condition
health. The WHO understands health ity." Unless one (2) needs no
health in the theoretical sense is an equally value-free empirical analysis of the species rather than by the explanation. As for (3), the connection
8
broadly as including physical, mental, j is to aban
concept. The notion required for an analysis of health intentions of a designer. But otherwise the parallel don the betw een illn ess and diminished responsibility has
�d social well-being .
is not that of a good man or a good shark, but that of a seems exact. A person who by mutation acquires a _ _ __ __ ) physiological para- often been argued,9 and I shall men
dig m alto get her , one suggestive tion here only
good specimen of a human being or shark. sixth sense, or the ability to regenerate severed limbs, this definition is far too wid e. Health point.Our notion of illness belongs to
All of this amounts to saying that the epistemol­ is not thereby healthier than we are. Sixth senses and is functional the ordinary concept
normality, and as such is desirable ual scheme of persons and their
ogy King suggested for health judgments is, at bot­ limb regeneration are not part of the human design, exactly insofar actions, and it was
as it promotes goals one can justify on developed to apply to physio-
tom, a statistical one.The question therefore arises which at any g iven time, for better or worse, just is independent log i cal diseases. Con
grounds.But there is presumably no sequently the relation between
how the functional account avoids our earlier objec­ what it is. intrinsic value persons and their illn
in having the funct ional organization esse s is conceived on the model
tions to statistical normality. King did explain how We have been arguing that health is descriptively typical of a spe­ of their relation
cies if the same goals can be better achi to thei r bodies. It has often been
to dissolve one version of the paradox of saying that definable withm medical theory, as intelligence is in eved by other observed that physiol
means.A sixth sense, for example, ogical pro cesses, e.g. digestion
everyone is unhealthy. Clearly all the members of a psychological theory or validity in logical theory. would increase or peristalsis, do
our goal of efficiency without increasi not usually count as actions of ours
species can have some disease or other as long as they Nevertheless medical theory is the basis of medical ng our health; at all.By the same
so might the amputation of our legs token, we
do not have the same disease.... But this answer practice, and medical practice unquestioningly pre­ at the knee and are not usually held
their replacement by a nuclear-pow respon­
does not touch universal diseases such as tooth decay. supposes the value of health.We must therefore ask ered air-cushion sible for the resu
vehicle. Conversely, as we have seen lts of such
Peristalsis
, there is no a pro cesses wh en The rhythmic waves of the
Although King nowhere considers this objection, the how the functional view explains this presumption priori reason why ordinary diseases the y go smo
cannot contrib­ wrong, though we oth muscle of the digestive
natural-design idea nevertheless suggests an answer that health is desirable. ute to well-being under appropriate circ may be tract that propel ingested food
that I suspect is correct. If what makes a condition In the case of physiological health, there are umstances. blamed for failing to take forward.
In such cases, however, we will be
a disease is its deviation from the natural functional at least two general reasons why the functional reluctant steps to prevent malfunctio
to describe the person involved as n
ill, and that is at some earlier tim
e ....
Hacking: Madness: Biological or Constructed? 219
216 CHAPTER 13 Wha t is Disease?
carefully enough to the grammar of the word itself d i sorder (ADH D). 1 . . . Perhaps children diagnosed
(Austin 1962; Hacking 1983; 1995). But in the special with ADHD are different from the children once called
Study Questions:.____________� context of mental illness we have, for the past two cen­ fidgety-in part because of the theories held about
says: "Th� turies, been constantly renegotiating our notion of reality. them, and the remedies that have been put in place
Boorse, is 3. Explain what B oorse means when hle
1. What is normativism? Why, accord ing to notion required for an analysis of hea th is
not th a "Social construct" and "real" do seem terribly at around their bad habits. Conversely, it may be that the
it is flawed notion? of a go od man or a good shark, but that of a good odds with eac h other. Part of the tension betwee n resulting changes in the children have contributed to
a se and an
2. What is the diffe rence between a dise specimen of a human being or shar k." the real and the constructed results from inter action the evolution of i deas about problem child ren. That is
illness? Give an exam ple of each . between the two, between, say, child abuse, which an example of interaction.
is real enough , and the idea of child abuse, which is I want to focus not on the children but on the
constructed. But that is not all . We can also c onfuse classification, those hinds of children, fidgety, hyper­
more complex typ es of interactions , which make some aqive , attention-deficient. They are i nteractive ki nds .
Notes Philos ophy
York, 1961) ; b Margolis in "!llness and Medical Values," The sted �y people think of antique dualisms between mind and l do not mean that hypera ctive children, the indi­
l. Thomas S. Szasz. The Myth of Mental Illness (New . PP· 4o, 42· F�rum 8 (1959): 55-76, section II. It is also sugg : body. These come out most clearly when we turn to viduals, are interactive. . . . � - -- --
Antony Flew, Crime o r Disea (New York , 1973) s, Inquiry
Ronald B. de Sousa, "The Politics of Mental lllnes as w ll m
se?
1963). chap.
2· R. M. Hare. in Frw:lom and Reason (New York, ing alone. If the very habitus of mind and body, psychopatholo gy. Interactive is a new concept I nteractive kinds
presc riptiv e mean 15 (1972): 187-201, p. 194. and possibly by Flew scien �
ce Classifications in wh ch the
2, argues that no terms have Crime or Disease? pp. 39-40. I think philo�phers funmon
of Most present-day research scientists take sc hizophre­ that applies not to people but classification schema may
and w a_k
this view is accepted, the difference between strong thy: is have made too much progress in givin g b1olo g1cal nia to be at b o ttom a biochemical or neurological o r t o classifications, to kind s , interact with the thing classified
normativism concerns the quest ion of whet her "heal to be very
statements a descriptive analysis for this argument genetic disorder (perhaps all three). A minority of crit­ to the kinds that can influ- and vice versa. With respect to
"primarily., or ·secondarily" evaluative. convincing. . . . es and other
"ill" may have human disease, an interactive
3· Thomas Nagel has suggested that the adjective about health 7· For further discussion o[ environmental mJun hed m t_his
ics think that in important ways the disease has been ence what is classified. And
kind is a disease classification in
oppo site ·well ." Our think ing
its own speci al
currency. details of the functional account of health sketc socially constructed. I do not want to take sides, but because kinds can intera c t
might be greatly clarified if "wellness" had some of Biology section, see my forthcoming essay "Health as a Theo
reucal to c reate a space in which both ideas can be developed with what is classified, th e
which people classified as having
"The Mean ing of Norm al; Journ al a disease change in response to
4· C D ly King Yale
itions of health Concept." without too much immediate confrontatio n-and classification itself may be
a�d �edi cine'i 7 {1945): 493- 494. Most defin being classif ed.
narie s inclu de some refere nce lo funcu ons. S. Quoted by Flew, Crime o r Disease? p. 46. . ..
s1_ b1\1ty · without much social construction talk eithe r. . . . modified or replaced. '- -- -- - -- -----
in medi cal dictio 9. A good discu ssion of this point and of the undely I;�umma�::g
lation also appea rs in Fredn ck
Almost exactly King's formu dition (1) is provided by Flew in the extreme ! do not necessarily mean that hyperactive chil­
el X. Freed man, Theor y cond
and Dani second chapter of Crime or Disease? Flew takes thes.�illness��,
and Practice
C. Redlich The
dren, as individuals, on their own, become aware of
of Psychiatry (New York, 1966), P· 1
13. . . mean ing of "dise ase• rathe r han Children
tions as pan of the '. how they are classifie d , and thus react to the classifi­
The Phrlosofhical Review.
!·.
," to appea r in usage of
"Wright on Func tions
generates but since he seems to be working from the ordinary
The view that function statements are norm auve most fully "disease," there may be no real disag reem ent here. Childhood has been calle d a social construct. Some cation . . . . The classification hyperactive did not inter­
the third argum ent for norm ativis m. lt is prese nted people mean that the idea of childhood (and all that act with the children simply because the individual
implies) has been constructed. Others mean that a cer­ children heard the word and changed accordingly.

MiMt•■
tain state of a person, or even a perio d in the life of a It interacted with those who we re so d e scribed in
M adne�s: Biolog�ca� : ���:��i�!:<!? : a va d u r r e human being, an actua l span of time, has b een con­ institutions a nd practices that were predicate d upon
n 01,: h A H r r nive sity P ss, 1999:
Ian H acking. The Social Constructio structed. Some thinkers may even mean that children, classifying child ren as hyperac tive . . . .

100-124. as they exist today, are constructed. States, conditions, We are especially concerned with classifications
stages of development, and children thems e lves are that, when known by people or by those around
And yet, and yet, there is a minority that
. . . It is easy to be skep­ or conditions. our ideas worldly objects, not ideas. Thus it may be contended them, and put to work in institutions , c hange the
Schi zoph reni a tical abou t man y of the will say that these disorders-and not just that children now-take two small individuals named
\ often argu- ways in which individuals experience themse lves­
A serio us mental illnes s entr ies in contemp orary about them-are social cons truc ts. Very Sam and Charlie-boy-are different from childre n at
---� an d m ay even lead people to evolve their fe elings and
characterized by flat emotional i man uals . . . . men ts are exp ressly put .----
diag nost
responses, detachment from reality, some other time, because the idea of childhood-the behaviour in part because they are so classified. Such
c
No, X is
1 will examine illnesses as: X is real-
Social conatruct
and hallu cinations. Some thing that exists as matrix of childhood-is diffe re nt now. . . . Conve rsely, kinds (o f people and their b e haviour) are interactive
such as schi zophren ia constructed. a product of human social the idea of childhood may have changed from what it kinds. This ugly phrase has the merit of recalling
It is not only the con- interactio n i t is not separable
___ -- -- -
. . . . These
and conditions such as mental retardation was long ago, if children now are different from chil­ actors, agency and action. The "inter" may suggest
hum an race in mos t p � a � stru cted that conf uses from the ideas that people at a dren then.
have been with the lace d
.... the way in which the classification and the individual
datio n epid emic s m us here, but also the real. particular time and place may
times. There are no men tal retar _ To u s e a l e s s classifie d may interact, the way in which the a c tors
Hilary Putnam (1994) hit I have about It.
Attentio n deficit hyperactivity
the vario us word s use to descnbe __ grand example than
Argentina, even if may b e come self-aware as being of a kind , if only
d dis ord er (ADHD )
le mind e t were used only the nail on the head , when A syndrome of inattentiveness, over·
the condition , such as "feeb d
philosophical error of s_up· the whole of child­ be cause of being treated or institutionalized as of that
gly reflect he wrote about a "common activity, or impulsiveness (or some
at a specific time and place and very stron ity' must refer to a singl e supe r thmg , combination thereof) out of the range ho o d, there has been kind, and so experiencing themselves in that way. . . .
soci al a ttitu des and posing that 'real endl sly of normal childhood behaviour. The a historical succ es­ Too much philosophy
ing at the ways in which we �
inst ituti onal prac ti­ instead of look nouo n diagnosis of ADHD has increased sion of ideas: fidgety, has been built into the epi- f Ind ifferent ki nd --� -----
gotiate-our
Real
exists in the world ces. The nam e schizo­ renegotiate-and are forced to rene of dramatically in recently years and it hy p eractive, attention thet "natural kind ." Al l I Class fications in which the
Something that language and our life develops." One
and that is separable from the ideas phrenia was inve nted of reality as our t
is now thought to affect up to 5 per
deficit , and attention want is a contrast to inter- l classification schema does not
c ome confuse d in debates abou
that people at a particula r time and only in 1908 . So what ? the reasons that we be
ss is real or not is that we fail to attend
. --
cen t of school-aged children.
d
__) e fici t hyperactivity active kinds. I n d i ffe re n t
�teract with the thing class1fied.
place may have about it.
----- These are rral illnesses whether an illne
Hacking: Madness: Biological or Constructed? 2.21
220 CHAPTER 13 What is Disease?
» those who improve under such treatment are close identify its etiology by neurochemistry are doomed.
» nt i n the instance of the fundamental tension between the "real
will do.The classi fication "quark is indiffere to the levels in nondepressive patients, whereas before � chizophrenia is not a kind of disease.The motley of
differ­ and the "constructed.» I am attempting to address the
sense that calling a quark a quark makes no treatment serotonin was depleted. Once again, for impai red individuals that at di fferent times, and in
passive. felt tension with a less tired set of opposites.We need
ence to the quark.Indifferent does not imply convenience, I shall call this biolooping. different ways, have been handily lumped together as
pluto­ to make room, especially in the case of our most ser­
The classi fication plutonium is indifferent, but There is every reason to suppose that biolooping schizophrenics are not of a kind. Schizophrenia, in
pluto­ ious psychopathologies, for both the construcuonist
nium is singularly nonpassive. It kills ....But and classificatory looping could both be at work in short, is a scientific delusion....
nium, in and the biologist.... l shall begin by stating the con­
nium does not interact with the idea of pluto some psychopathologies-and, who knows, in much We need not embrace anti-psychiatry to realize
nium, or structionist attitude to three severe mental disorders.
vi rtue of being aware that it is called pluto of ordinary life as well. But first let me focus on clas­ that the classification as schizophrenic, and current
utions like
experiencing existence in plutonium instit Biolooping
sificatory looping. I briefly sketch both the construc­ attitudes to and treatments of schizophrenics, are mat­
tank s. So I call i t indif­ tionist and the biological attitudes to three terrible ters of which the patients, for all the ir per iodic deficits
reactors, bombs, and storage d indi fferent and
t, not First, a warning.We have contraste
ferent....The classification microbe is indifferen gs may inter­ mental problems.I start w ith constructionist visions of logic and sense of reality, are intensely aware.More
e, altho ugh we are certa inly not indif feren t interactive kinds: conscious human bein of each, and then pass to biological ones. of them are more aware now than they used to be.
interactiv h they are aware.
But not act with interactive kinds of whic
to microbes, and they do interact with us. diffe rent phen omenon.lt too This is because of the continually developing arsenal
There is a substantially The Feeble Mind
because they know what they are doing. actio n, and l want at first of psychotropic drugs that is already able to bring
they may properly be called inter
When philosophers talk about natural kinds, loop ing effects that On the construction side we have, for example, some semblance of ordinary life to more than half of
e-of to keep it quite separate from the
take the i ndifference-in my technical sens 2 Inventing the Feeble Mind, a book that shows how the those patients diagnosed with severe schizophrenia.
.... I have been discussing.
natural kinds for granted.That is to be expected seemingly inevitable classification, "retarded child,» The medications make it easi er for someone who is
term s Everyone knows that our physical states affect our
The thin gs classified by the natu ral-kind ve that our men­ overlaps with and has evolved from a host of ear­ afflicted by such a mental illness to th i nk of it as
ured in phil osop hica l writ ing are not aware of sense of well-being.Many of us belie lier labels: ill-balanced, idiots, imbeciles, morons, something "other," a thing, almost an agent that acts
favo some effect on our physical condi­
how they are classified, tal states may have feebleminded, mental deficients, moral imbeciles, upon one .... Classification as schizophrenic affects
is the technique that spans mind and
and do not i nteract w ith tion....Yoga subnormals, retardates. Each of these classifications the sensibilities of those classified in many ways....
Multiple sclerosis lusively, and serves as the model for
An autoimmune disease affecting the their classifications.The body most conc has had its moment of glory....At the time that each The schizophrenic, as a kind of person, is a moving
edback.This phenomenon, which is
brain an d spinal cord that may cause canonical examples have notions of biofe classification was in use, it seemed somewhat inevit­ target, and the classification is an interactive kind.
loss of balance,fatigue, doublevision, but not understood, is distinct from
been : wate r, sulp hur, well established better able, a perfectly natural way to classify children with
and paralysis. It is most commonly horse, tige r, lemon, mul the looping effect of interactive kinds. For lack of various sorts of deficit.Yet when we see the parade Childhood Autism
diagnosed in adults betw een 15 and I /body effect biolo ng, opi
of age, and it i thr e tim s tipie scler osi s, heat and nametags l shall call the mind of ungainly labels, we quickly realize that these clas­ My third example, childhood autism, bridges my first
40 years s e e
m ore common in women than in men. the colour yellow. . .. by analogy with biofeed­ Biolooping
sifications are highly contingent.... two. The name "autism" was invented by Bleuler to
Canada has one of the highe st rates j None is aware that i t is bal k. The other is clas­ The interaction between our physical describe a characteristic family of symptoms in the
of MS in the world. fi ed .... sificatory looping. I need Schizophrenia
___________ so c1 assi and mental states, for instance,the group of schizophrenias.Adult patients lost the usual
the distinction because ability of deep breath ng exercises to Or take schizophrenia. Here we have for example sense of social relationships, they became withdrawn,
of course, in particular calm the m nd. Schizophrenia: A Scientific Delusion by Mary Boyle gave inappropriate responses, a phenomenon deeply
Psychopathologies cases, both types of loop­ who, in her preface, avows that she is a social con­ disturbing to family and friends.Then the word "aut­
some­ ing may be at work, and Biofeedback
A far more interesting issue is, what happens if structionist. Her subject is seemingly less amenable ism" was applied to some children previously regarded
ferent indeed mutually reinforce
thing is both an i nteractive kind and an indif each other ....
Using instruments (such as a to such treatment than that of mental retardation.... as feeble-minded, or even deaf-and-dumb.This was the
obvi ous cand dates . heart rate m onitor) to provide
ki nd? Psychopatholo gy furnishes As Boyle herself says, she concentrates not on schizo­ result of Leo Kanner's many years of study of a quite
i
hopa tholo gy, Clos er to men tal ill­ information on a bodi y funct ion
I do not want to insist on any one psyc ls with the goal of being able to phrenics but on those who diagnose schizophrenia. small number of children.He published it in 1943.At
is nes s, serotonin leve
but will mention a range of cases. Each of them
-
manipulate the system at wi I (for She recounts the history of this kind of patient. She that time the prevailing view, influenced by the (brieO
pit of are now correlated wi th instanc e, slowing the heart rate).
to some extent a dreadful mystery, a veritable notes stark mutations in the concept of schizophrenia. dominance of psychoanalysis in American psychiatry,
aut­ depr essiv e state s. An
human ignorance: mental retardation, childhood She claims that clinicians are often benignly unaware was that the autistic child had a "refrigerator mother,"
autism experimental study-not
ism, schizophrenia. lt is true that childhood of them.She argues that the introduction, definition, one who could not express emotion to the child....
enia just statistical analysis­ Serotonin
was d iagnosed only in 1943, and that schizophr and characterization of this theoretical notion fails Cogn itive science now rules some roosts. Since
spread is possible. Take a class of A neurotransmitter found in
was named only in 1908, but there is a wide
conviction that these disorders are here to stay,
and patients diagnosed with the digestive tract, in volved
the brain
depression, who improve and regulati on of intestinal
.It 1s
platelets, -- - - - - -
Criteria of adequacy -1l to satisfy criteria of
adequacy set out by
autistic children have many linguistic and other
deficits, theories of cogni- (
t i o n may be invoked. A Theory of mind
I
were with us long before they were named. i n the
Conditions that must be fulfilled in C. G. Hempel, that
under purely behaviou ral order for a scientific explanation t o be The abl ity to attribu�e mental
There are competing theses about these three m ovements, blood clott ing, moSt careful of logical recent fashion has been to states, !including _ beliefs, des ires
treat men t. Ther e is no and m ood. Selective serotonin considered satisfact ory. The criteria
I
I
very
examples. One type of thesis tends, speaking of adequacy include: the explanation emp i ricists.. . . Her argue that the autistic child and knowledge, to oneself and '
r type chem ical inte rven tion reuptake inhibitors, a commonly
loosely, to the constructionist camp. The othe sant �ust be in the form of an argument; conclusion, stated lacks a "theory of mind." A others. It is thoughtto be critical
g ical whatever, only a type of used class of anti depres
tends, once again speaking loosely, to the biolo
camp.In the constructionist camp, these disor
ders are psychobehavioural ther­
drug
incr
s, are thou ght to work
easing the availability of
by 11 m�st contain at least one general
law; it must be true; and, it must be I baldly, is that schizo-
phrenia is a c on-
single ingenious experiment I to the capacity to understand
originally suggested by phi!- and interact suocessfully with
, they apy.Results indicate that ser otonin in the bra n. maximally specific. other people.
interactive kinds of illness.In the biological camp ... ..., struct. Attempts to osophers has spawned an
~

____ _
s. Here is a very sharp the serotonin levels of
are thought of as indifferent kind
222 CHAPTER 13 Vvhat is Disease?
Hatking: Madness: Biotog1cal or Construc
ted? 223
experimental industry.3 That is often the case in that there is just one such pathology, call it P, and that what we now call autism, then, in Krip
_ ke-Putnam For the Study of Dyn
psychology, where new experimental ideas_ are as rare in reasonable time, we discover what p is. A gre�t semantics, the kind-term "childhood amics, Not Semantics
autism" rigidly In the end, the
and as hard to invent as deep mathematical proofs discovery is reported: "Autism is p_n Optimists will designates that pathology. Shall we "real vs. construction" tension turns
_ say that when out to be a rela
or truly new magic tricks. But as with retardauon say that we won't have to wait �on�.... By hypoth­ Kanner coined the name "childhood auti tively minor technical matter. How to
_ sm," it referred devise a plausibl
and schizophrenia, there continues to be � su�stan­ esis the pathology p will be an md1fferent kmd. The to pathology P? Some would give him e semantics for a problematic class
what Putnam of kind terms?
tial iconoclastic literature urging that autism is not neuro-geno-biochemical state p is not aware of what calls the "benefit of the dubbed"-yes, Term s for interactive kinds apply to
he referred to human beings and
something people just have, and that autism is no we find out. It is not affected simply by the fact that we P, even though he (like ourselves) had not their behaviour. They interact
the remotest with the people clas
single disorder.... have found out about it, although of course our new idea what childhood autism really is, sified by them. They are kind­
namely P. ... terms that exhibit a looping effect, that
By interaction I do not mean only the self-co�­ knowledge may, with luck, enable us to intervene and Now for the bottom line. Someone writ is, that have
es a paper to be revised because
scious reaction of a single individual to how she �s either prevent or ameliorate the pathology.... titled "The Social Construction of Chi the people classified in a cer­
ldhood Autism" tain way change
classified. I mean the consequences of being so classi­ The author could perfectly well maintai m response to bemg classified. On
n (1) there is the other hand, som
fied for the whole class of individuals and other pe?ple probably a definite unknown neuropa e of these interactive kinds may
with whom they are intimately connected. The aut'.st�c
A Dilemma 1s the cause of prototypical and mos
thology P that pick out genuine
caus al properties, biological kinds,
t other examples which, like all
family, as we might call it-a family with an auusuc Suppose that childhood autism is at bottom � bi ?• of what we now call childhood auti indi fferent kinds, are unaffected, as
sm; and (2) the kinds, by wha
child-was severely influenced, and some would say logical pathology P, namely ... what I call an md1f­ idea of childhood autism is a social t we know about them. The semantics
construct that of Kripke and Putn
damaged, by the doctrine of the refrigerat�r mother. ferent kind. What then happens to the claim �hat interacts not only with therapists and am can be used to give a formal
psychiatrists gloss to this phenom
The subsequent changes in the family contributed to a childhood autism is an interactive kind? Th_at is, a in their treatments, but also interact enon.
s with autistic
rethinking of what childhood autism is-not because kind in which the humans classified may mdeed children themselves, who find the curr Far more decisive than semantics is the
dynamics
ent mode of of interactive kind
one found out more about it, but because the be�av­ change through looping effects, because ?f the ways being autistic a way for themselves to s. The vast bulk of constructionist
be. writing has examined the dynamics
iour itself changed. Most of the behaviours descnbed in which the people classified react to bemg so clas­ In this case we have several values for of this or that
sified? How can it be an interactive kind and also an the X in classification and the
by Kanner seem not to exist anymore. the social construction of X = childho human beings that are classi­
indifferent kind? This is one way in which to address od autism.... fied by it. ... We
_ For us, the interest would be not in the have a dynamics working at the
Indifferent versus Interactive an issue that troubles many cautious people, the idea semantics but level of classific
the dynamics, How would the discover ation and at the level of biolooping.
y of P affect Semantics intrigue
There is, then, not only a strong pull towards a con­ that something can apparently be both socially con­ how autistic children and their fam s the logician, but the dynamics
ilies conceive of classificatio
structionist attitude to many mental disorders, but structed and yet real. • • • of themselves; how would it affect thei n is where the action is. If we begin
r behaviour? to move among cyb
also a great interest in what the classifications do What would be the looping effect on the orgs, or to become cyborgs, bio­
stereotype of looping will bec
to the individuals classified. One of the defects of Semantic Resolution autistic children? Which children, form ome a common fact of everyday life.
erly classified Classificatory loop
social-construction talk is that it suggests a one-way At this juncture, philosophers may like to think of as autistic, would now be excluded, and ing will continue alongside it
what would until, perhaps, the
street: society (or some fragment of it) construct� the childhood autism and the postulated pathology p that do to them? ... two become one in a world that
disorder (and that is a bad thing, because the disor­ in terms of the lheories of reference advocated by no one can foresee.
der does not really exist as described, or would not Hilary Putnam (1975) ------,
really exist unless so described). By introduci�g the an d S au I K n � ke . The Theories of reference
" . , .
idea of an interactive kind, I want to make plam that term auttsm is what An account of how terms acquire Study Questions
we have a two-way street, or rather a labyrinth of they would call a natural- � specific referents; in this case, an
account of how the term •auttsm'
interlocking alleys. kind term, analog�us to identifies children with autism.
_ l. Explain Hacking's distinction betw
There is obviously another side to this story. the multiple sclerosis that -- een interactive 3. If a disease is socially constructed
and indifferent kinds and give an example does that imply
There is a deep-seated conviction that retarded chil­ Putnam long used as an example (even before work­ of each. that it is not real? Why?
dren, schizophrenics, and autistic people � uffer from ing out his theory on the meaning o� "meanmg").4 If 2. What is biolooping? How does it diffe
_ _ r from inter­
one or more fundamental neurological or biochemical there is in fact exactly one definite b10log1cal pathol- active kinds?
problems which will, in the future, be identified. It ogy p Underlying a broad class of autistic children,
_ . ".
is not claimed that every person now diagnosed will then the reference of the name "ch1ldhood auttsm is
have the same problem. • · · P. Under this hypothesis, the name "childhood aut­ Notes
We need not argue that nearly all children diag­ ism" is, in Kripke's terms, a rigid designator of a nat­ A research paper by David Pantalony introduce
nosed with autism today have exactly one and the ural kind, namely the pathology P. In my te�ms, the and its precursors, but he might not agree withd me to ADHD candies. Jack is asked to come back into the
same biological disorder.We need only hol� possible pathology p is an indifferent kmd, and childhood
" this series ofdiagnoses from fidgety to ADHD. my take on he enters Jill is asked, what will Jack think room , but before
2. I owe this discussion to a quest ion Jill says dinosaurs, she has a theory of mindis m the box? If
that there are a few (possibly just one) basic funda­ autismn is the name of that kind.. • • posed in Paris by Pierre­ candies, she does not. , but if she says
Henri Castel, and clarified for me by Daniel Andl
mental biological disorders that produce the symp­ Our difficulty then seems merely verbal. Ye� , if 3. Jack and Jill are shown a box with plastic er. 4. The example occurs in a number ofpapers of
Putnam's, start­
toms currently classified as autistic.Imagine, however, there is precisely one neuropathology p underlymg Jack is sent out of the room, The dinosaursdino saurs in it. ing no later than his 1961 talk to the American
are replaced by for the Advancement of Science, printed in Butle Association
r (1965).
>
224 CHAPTER 13 What is Disease? Callahan: Menopause: Taking the Cures or Curing the Takes?
2.2.6

References transition that begins with a woman 's first hot flash Physicians, of course, deny that pharmaceutical
Austin, John Langshaw. 1962. Sense and Sensibilia. Oxford: Putnam, Hilary. 1975. The meaning of 'mea�ing.' In and ends when a woman's hot flashes disappear.3 As company
_ marketing influences their prescribing prac­
Clarendon Press. Putnam. Mind, Language and Reality. Vol. 2 of Philosophical most women with the full experience of menopause tices ....
But, as I have suggested elsewhere, the phar­
Boyle, Mary. 1990. Schizophrenia: A Scientific Delusion? Papers. Cambridge, Mass.: Harvard University �ress know, this period is indefinite in duration, often maceu
___ , 1994. Sense , nonsense and the senses: An mqu1ry
_. tical industry is not a bumpkin, and at least
London: Routledge. beginning several years prior to menopause itself one series
Hacking, Jan.1983. Representing and Intervening. Cambridge : into the powers of the human mind. The Journal of of studies has found that physicians seem
and continuing for several years after menopause. pretty obvio
Cambridge University Press. Philosphy 91: 445-517. usly to be influenced by pharmaceutical
. A History
_ It is true that some women do not experience hot companies
_. 1995. Rewriting the Soul: Multiple Personality and Trent, James W. 1994. Inventing the Feeble Mind: that sponsor continuing education ses­
of Mental Retardation in the United States. Berkeley. flashes. What is helpful about Yoda's understanding sions
the Sciences of Memory. Princeton: Princeton Unive rsity for doctors. 6
Press. University of California Press. of perimenopause, however, is its recognition that As the baby boomers continue to age, contempor­
Kripk e , Saul. 1980. Naming and Necessity. Cambridg e , what we generally call "menopause� is not a discreet ary adver
tising is changing. The elderly are increas­
Mass.: Harvard University Press. event at all, but rather a period of time of indefin­ ingly
represented as vibrant, and more and more
ite duration (although commonly three to six years) produ
cts are targeted at the aging population. At the
over which a woman moves into a new physiological same time,
pressure on women to address the marks
ll#ld=i◄ Menopause: Taking the Cures or Curing the Tak�s? life phase, which includes the cessation of ovulation of aging
and the lowering of hormone levels. What is com­ hair, to
on our bodies increases-pressure to dye our
Joan c. Callahan I In: Margaret Urban Walker {ed.}. Mother Time: Women, Agmg and Ethics. have our faces lifted, to do all that we can
New York: Rowman & Littlefield, 2000: 151-74, monly known as "menopause", then, is really peri­ to preclu
de menopause.ls it so different from 1966,
menopause .... Here, 1 want to look at how women's when
Robert Wilson began urging us to be "femin­
aging, perimenopause, and menopause are currently ine foreve
"Menopause is curable . . . The body changes disrupted by menopause; the second �f menopau� e r"? It seems not, except that the rhetoric
presented in Western culture. of retaining femininity has evolved into a rhetoric of
typical of middle age can be reversed, and sex­ as a disease in need of medical intervention.... It will
As Jacquelyn Zita points out, aging in general and maintaining
ual Junct ions can be be obvious in what follows that I have serious reserva­ health.We need, then, to ask just what
menopause in particular are culturally represented women
Menopaus e restored, along with a tions about the administration of hormones; but let 's health at midlife genuinely requires, in par­
as heretical changes in the female body.4 As intoler­ ticular
The cessation of menstruation fully feminine appear- me make clear from the beginning that my overall , whether it generally requires taking hormones.
ance of the appearance of the aging woman's body In order
(periods), or the time in a woman's ance ... Menopause is concern in this chapter is with appropriate admin­ to approach an answer to this, we need first to
life in which this occurs. Menopause increases , women are under more and more pres­ understand
completely preventable. istration of hormones and with women's genuinely what menopause actually involves.
is commonly associated with sure to halt, or even reverse, these changes.... As
No woman need suffer informed consent to hormonal intervention.
symptoms such as hot flashes and another example, consider a number of contempor­
headaches, and in some women menopause or any of its ary representations of older women in film. Aging The Basic Endocrinology and
these symptoms are severe. symptoms if she receives Cultural Constructions actresses, such as Shirley Maclaine, Anne Bancroft, Physiology of Menopause
preventive treatment
In order to get a good start on an exploration of the and Vanessa Redgrave, have recently appeared i n Menopause involves hormonal
changes.As interc el-
before the onset of menopause ... In effect, the new cultural and physiological d1mensions of menopause, films representing older women as cranks, witches, lular messengers, hormones
medical possibilities double a woman's emotional are part of the body's
we need an overview of characters, or fools of one son or another.s... regulatory system. When certain demands are made
lifespan. Forty no longer looms large as a dividing
the conceptual landscape. [ Ovari�llicular activity In line with such degrading cultural representations of the body, appro priate
line. No longer is her life in danger of being broken
Several terms are used to The production of eggs by of older women, states and processes that are perfectly hormones are secreted into [ lntercellular m�ngers - -­
in half by 'the change.' Now at last, her life can be a the female gonads.During a
talk about menopause, woman's reproductive years, one normal for women, such as menstruation, pregnancy, the system, where they find Transmitters of signals between
harmonious continuity not threatened by the sud­
including perimenopause, of the ovaries releases a mature and menopause, are constantly medicalized . There and bind with receptors on distant cells in the body. The
den disruption of her womanhood, but marked by is now an abundant literature on the history and cul­ cells, which (ultim ately) endocrine system secretes
climacteric, premenopause, egg each month. All the eggs
the growth and enrichment of that womanhood. �i hormones into the blood stream
and postmenopause, as well a woman wi I produce in her
l
tural representation of allows tissue to address the to have effects on distant tissues.
So w rote g y n ecolo­ as menopause itself. The lifetime are present in the ovaries Medicalize
before birth, and some may lie Totreat something as a medical menstr uation and the body's needs.7 for women, For instance, the maturation of
Estrogen (or ho rmon e) gist Robert A. Wilson use of these terms is not dor l �up to 50 years. _ problem without the justification to very destru ctive con­ transi tions into and out of eggs in the ovary is triggered by a
replacement therapy
The provision of estrogen, a
in 1966, as he cham­
pioned estrogen replace­
entirely fixed....
Voda2 defines meno­
doso.
_I
struction of PMS (pre­ the reproductive yea rs are
menstrual syndrome) marked by substantial flue-
l hormone released in the anterior
pituitary gland in the brain.
hormone, in a pill or injection form, -- -- -­
ment th erapy for all pause in the standard Phenomenological as a malady that places women with regularity under tuations of the sex hormones.
During puberty, a
to supplement low levels of estrogen women approachi ng, way, as the permanent The descnpt1on of facts or the sway of "raging hormones." .. . And, as the baby woman's reproductive hormonal
system is gearing up;
associated with menopause. exper ences as opposed to
Hormone replacement therapy is undergoing, or after cessation of menstrua causes that may remain hidden. boomers move into their fifties, menopause increasingly during perimenopause, her reprod
uctive hormonal
effective in reducing the symptoms of menopause. Wilson's tion resulting from loss In th s case, hot flashes are the is billed as a malady requiring medical intervention.... system is gearing down. Both
are perfectly normal
menopause. It was widely promoted m anifesto ex presses of ov arian fol licular phenomenon experienced by Thus, it comes as no surprise that the pharmaceutical developmental stages, and both
women whereas the cessation generally take from
until its association with increased two takes or conceptual activity, and she defines industry has become deeply invested in the medical­ three to six years for completion.

--
risks of breast cancer, heart disease, constructions-the first perimenopause phenom­ of foll c�lar activ ty (the cause) is ization of menopause and the marketing of drugs to
and stroke was discovered. not experienced. Menopause is the cessation of menstruation
___., of womanhood itself as enologically, as the treat it.... resulting from the cessation of ovulat ion .•.. It
Callahan: Menopause; Taking the Cures or Curing the Takes? 2:n
226 CHAPTER 1 3 W'hat is Disease?

that physicians now recogmze women's felt experi­ Long-term use of EHi, however, is a more worri­ bone fragility and a consequent increase in fracture
involves the shedding/reabsorption of the outermost some matter, and in recent years women have been
layer of the uterine lining.That lining is built up and ence of those changes as real is, without question, a risk."11 But, as Susan Love points out, one of the prob­
good thing. What is so problematic, however, is that urged more and more strongly to adopt EHi for the long lems with this definition is that presently there is no
sustained by estrogen and progesterone.As a woman term (use for ten years or more). Heart disease is the
approaches menopause, her quantities of these hor­ this recognition has taken place within a construc­ way to test the microarchitecture of bones; so diag­
tion of menopause as a hormone deficiency disease. major killer of postmenopausal women. Osteoporosis noses of osteoporosis are made simply on the basis of
mones fluctuate; ...a woman can experience effects of can lead to fractures, substantially decreased qual­
both high and low estrogen levels.Low estrogen levels The movement is a breathtaking one, from "It's all in bone density tests, and this is pressing the common
your heads " to "You are all ill and in need of medical ity of life, and even death for some postmenopausal understanding of osteoporosis as equivalent to low
(associated with hot flashes) can cause a woman's sys­ - - - - -- -- women. It is now
tem to suddenly wake up and suddenly overproduce intervention." But surely there 1s an in-between .... bone density, which, as we shall see in a moment, is

I
Osteoporosis continually claimed simply inaccurate....
estrogen.This can cause phenomena associated with A disease 1n which bone mass is lost
The Reported Benefits of Exogenous in the media and in This is not to fail to take osteoporosis and the risk
high estrogen levels, such as headaches and breast ten­ over t me, 1ead ng to ncreased bone
derness.These fluctuations in hormone levels explain
why perimenopause can be a time of rapid and some­
Hormone Intervention
Before going further, I need to make explicit that it is four women ·n Canada over the age
I
frag1l1ty and nsk of fractures. One tn physici
that
ans' offices
women should
of osteoporosis seriously.The quality of life of women
affected by severe osteoporosis is profoundly comprom­
important to resist the current language of hormone of 50 has osteoporosis, and 25,000 j take exogenous hor­ ised. But it is to call for attention to how the language
times apparently inconsistent changes for a woman. h1p fractures a year (in men and
Negative features of these changes can be mod­ replacement therapy, since this language gives too mones to lower their gets used here.And most importantly, it cannot be
women) are attributed to the disease. j risk of both heart
erated by diet, exercise, and other lifestyle choices. much to the construction of menopause as a defi­ 1---- -- - - - - -- - � emphasized strongly enough that despite all the con­
But ... women are constantly encouraged to seek med­ ciency and a disease. Because there is no reason to disease and osteopor- temporary warnings and worries about osteoporosis,
simply assume that a woman should have the same osis. What was argued on the basis of femininity in 75 per cent of women will never develop it.12...
ical intervention for menopause; and when women the 1960s is argued on the grounds of longevity in
seek this intervention, we are commonly encouraged hormone levels during and after her reproductive EE, then, does seem to contribute substantially
years, instead of talking about hormone replace­ the 1990s. But what do we really know about these to slowing down bone loss. However, the mechan­
by physicians to take so-called hormone replacement alleged benefits of long-term EHi? ...
therapy as we enter into perimenopause to ease our ment therapy, I'll adopt the language of exogenous isms by which it does this remain unclear and, as in
hormone intervention (EHi) and administration of As it turns out, researchers are beginning to sug­ the case of cardiovascular risk, the benefits of taking
symptoms and/or prolong our health. Although the gest that the conclusion that estrogen alone lowers
dominant rhetoric has changed from Wilson's empha­ exogenous estrogen (EE).... estrogen often can be gleaned in other ways that do
As we have seen, perimenopause is a time when cardiovascular risk is much too simple.For example, not include the known and unknown systemic risks
sis on staying feminine forever to the rhetoric of liv­ we now know that women who take exogenous hor­
ing smart, Wilson's recommendation that women take a woman's system is undergoing substamial change of exogenous hormones.Given these risks, a woman
These changes are not limited to our reproduct­ mones tend to be of higher socioeconomic status than should not be encouraged to accept EHi, particularly
what is now known as hormone replacement therapy those who don't, they tend to be better educated, they
is more strongly and uniformly recommended by ive organs-many cells in our bodies are affected over the long term, unless it is very, very clear that she
by the hormonal fluctuations taking place in peri­ are thinner, they are likely to have had a hysterec­ is an appropriate candidate for this intervention....
physicians than ever before.It is time to ask whether tomy, and they are more likely in general to have their
women should accept this recommendation. menopause, and women commonly have a variety of
experiences that are consequent to these changes.It is health closely monitored-in short, we now know The Known Major Risks of Exogenous
important to realize, however, that these experiences that women on EHi tend to start out with a better Hormone Intervention
The Hormone Replacement vary significantly across women.Some women experi­ cardiovascular risk profile than those who are not on The most serious risks of EHi are breast and endo­
Therapy Debate ence a few hot flashes, which barely bother them, and EHL 1° Since this is the case, and since no controlled metrial cancers. Since it is now estimated that one in
little else.9 Other women have much more distressing studies have been done to determine in a precise way eight American women will develop breast cancer,
One dear articulation of the current dominant take what EE contributes to reducing cardiovascular risk,
on menopause is provided by Theresa Crenshaw: experiences-hot flashes that continually wake them even a small increase in risk is an enormous con­
from sound sleep, serious skin and vaginal dryness, we do not know what, if anything, EE actually does cern.What activists in the women's health movement
"Menopause is not a natural condition; it is an contribute here. This is further complicated by the
endocrine disorder and should be treated medic­ urinary incontinence and urinary tract infections, have long worried about is increasingly well docu­
headaches, and severe mood swings are among the fact that the cardiovascular survival benefits of EE mented-EH! is strongly linked to increased risk of
ally with the same ser­
most frequent of these....There is, then, no ques­ is thought to diminish with longer duration of use. endometrial and breast cancers....And researchers
Endocrine disorder iousness we treat other
tion that for some women, the perimenopause is a All of this is not to say, of course, that there are no are beginning to suggest that even shorter-term use of
Disease affecting the regulation endocri ne disorde rs,
by hormones. difficult transition. cardiovascular benefits of EE. But it is to say that if EHi might increase a woman's risk of breast cancer.13
of bodily functions such as diabetes or thy­
Examples of endocrine disorders There is also no question that EHi, particularly EHi there are any benefits attributable to EE alone, they What is more, new studies suggest that high bone
roid disease ."8 Given
include diabetes (lack of or that all women will containing estrogen, is effective in relieving these felt remain unclear; and it is to say that a woman's risk mineral density might be an important risk factor for
resistance to insulin), gigantism (an effects of hormonal changes at menopause.For most of developing heart disease increases as she ages, postmenopausal breast cancer....
excess of growth hormone), and experien ce menopause

1- women, these experiential phenomena will stop in a whether she takes exogenous estrogen or not.... Given that lowering one's risks of cardiovascular
Addison's disease (lack of cortisol). if they live long enough,
it is certainly difficult to relatively short period of time.However, a number of The other major claim most frequently made disease and osteoporosis so often can be accomplished
women accept EHi to help with their most distressing for EHi is that it helps to prevent osteoporosis. by diet and exercise, and leaving on consideration
understand how menopause is not a natural condi­ Osteoporosis is currently defined as "a disease char­
tion for women.... experiences; and for many of these women, short­ of endometrial cancer, why should women increase '
term use of EHi is an appropriate and substantial help acterized by low bone mass and microarchitectural our known risk of breast cancer by taking exogenpus
We have already seen that there are significant deterioration of bone tissue, which lead to increased
endocrine changes associated with menopause, and to their comfort during perimenopause. hormones unless this is the last feasible option? ...
22& CHAPTER 13 What is Disease?
CHAPTER 13 End of Chapter Resources 229

Study Question:s _________


:_ ___.__
Consider the following from the article by Chris
topher
1. According to Callahan, what does it mean for so e­

3. Long-term use of hormone replacement therap y Boorse: Health is functional normality, and as such is
thing to be culturally constructed? In w h at ways as is now k nown to increase risk of h eart attac k an d desirable exactly insofar as it promotes goals one
menopause been culturally constructed? stroke. In what ways might earlier studies that "Health is not unconditionally worth promoting, can justify on independent grounds. But there is
2. Explain Callahan's disagreement "':i�h th� s_tatem ent (falsely) suggested a lowering of risk of heart attac k nor is what is worth promoting necessarily health. presumably no intrinsic value in having the func­
"Menopause is not a natural cond1t1on; tt is 1 a ... have been biased? Although mental-health writers are especially tional organization typical of a species if the same
1
disorder." ls she right? Why? prone to ignore these points, even the constitu­ goals can be better achieved by other means.•
tion of the World Health Organization seems to
embody a similar confusion: 'Health is a state of
Outline Boorse's argument in your own words, pay-
complete physical, mental, and social well-being,
ing particular attention to the premises that he relies
on to support his main conclusion. Choose one of the
Notes and not merely the absence of disease or infirm­
premises for evaluation. Try to think of at least one
I. Robert A Wilson, Feminine Forever (New York: Evans, 1966; 8. Marie McCullough, "Hope or Hype?" Philadelphia Inquire_r
ity.' Unless one is to abandon the physiological
objection to this premise.
reprinted New York: Pocket Books, 1971). Quote from the (13 May 1996), cited in Love with Lindsey, Dr Susan Loves paradigm altogether, this definifton is far too wide.
Pocket Books edition, 17 and 20. Wilson does allow that fer­ Hormone Booh, (New York: Random House, 1977) 18 .
tility cannot be restored by medical intervention (17). 9. See, for example, Mary Lou Logothetis. "Disease or
2· See Ann M Voda, Menopause, Me and You: The Sound of Development: Women's Perceptions of Menopause and the
Women Pausing (Binghamton, NY: Haworth Press, 1977). Need for Hormone Replacement Therapy," in Menopause, ed.
For some slightly different definitions, see the World H�alth Callahan, 123-35. Logothetis reports that fully 75 p�r cent
Organization, Scientific GrQUp on Research on Menopause ll1 the of the women she interviewed indicated either no distress Mr Jones and Ms Roscoe were recently cont
acted by more commonly than girls. Symptom
19905 (Geneva: World Health Organization. 1966)._ or minimal menopausal distress, and only 7 per cent of the the fifth grade teacher of their son Matt expressing s usually start at
con­ an early age (before the age of seve
3. Menopause itself is never actually directly expenenc_ed or women she interviewed indicated severe menopausal distress. cern about his declining performance in scho n years) and in
demonstrated-it is inferred one year a f ter a woman s 1ast 10. KA Matthews, LH Kuller, RR Wing, EN Me1lahn, and P ol. Matt about half of cases, continue into
Jones-Roscoe is 10-year-old, and has a younger adulthood. The pri­
menstrual bleed. Jacquelyn N Zita, "Heresy m the Female Plantinga, "Prior Use of Estrogen Replacement Therapy, brother mary treatment is a daily dose of a
Sam who is 6-year-old and in first grade. In his stimulant drug such
Body: The Rhetorics of Menopause," in_ Menopause: A Are Users Healthier Than Nonusers?" American journal of first four as Ritalin; the drug has a para
years of school Matt was a good student, exce doxic al calming effect
Midlife Passage, ed. Joan C Callahan (Bloommgton: Indiana Epidemiology 143/10 (15 May 1996): 971-8, C Scha1er�r, lling in in children with ADHD. While the
HO Adami, R Hoover, I Persson, "Cause-Specific Moraht� mathematics and reading at or above his grade diagnosis was very
University Press, 1993): 59-78. level. uncommon forty years ago, it is now
5· See for example, Shirley MacLaine in Madame Sousat;:ha, Steel in Women Receiving Hormone Replacement Therapy, In the past year, though, his school performan the most common
ce has psychiatric diagnosis in children, affec
Magnolias, Guarding Tess; Anne Bancroft in Critical Care, Great Epidemiology 8 (1997): 59-65. declined in all subjects; a B+ average in fourt ting 1 in 10 boys
h grade Matt's age. Ms Roscoe wonders whet
Expectations, GI Jane; Vanessa Redgrave in Howard's End and 11. Conference Report. Consensus Development Conference: has become a C- average in the fifth grade. His her Matt's symp­
Two Mothtrs for Zachary. Redgrave's Mrs. Dalloway (thou_gh "Prophylaxis and Treatment of Osteoporosis." American teacher toms are really so recent, and points
reports that Matt is restless, and doesn't pay atten to restlessness as
true to Virginia Woolf's character) is also a profoundly foolish Journal of Medicine 90 (1991): 107-10, cited in Love wtth tion far back as the first full day of school.
in the classroom. He seems to have trouble focus Mr Jones is less
woman For an expanded discussion of older women m Iii�. Lindsey, Dr Susan love's Hormone Book, 79. ing on sure, and is puzzled by the seeming
tasks requiring sustained attention such as readi epidemic of ADHD.
see Jean Kozlowski, "Women. Film and the M1dhfe Womens 12. See, for example. "Menopausal Hormone Replacer_nent ng or
. problem solving. The teacher believes that Matt,
Choice: Sink or Sousatzka?" m Menopause, ed. Callahan. 3 22: Therapy." Canar Facts, National Cancer lnsmute, National like a 1. Do Matt's symptoms meet Boorse's definition of
6' See Callahan, "Professions, Institutions, and Moral Risk; Institutes of Health; http://rex.nc1.nih gov/lNFOR_CANCER/ number of other boys in the school, may have atten disease or illness?
tion
:-

and "Pushing Drugs to Doctors." Consumer Reports (February Cancer_facts/Section3/FS3_10.html (accessed 10 May 1998): deficit hyperactivity disorder (ADHD). 2. How might attention deficit hyperactivity
1992): 91-2. 3. F Gr odstein an d WC Willett, Correspondence. Before seeing their famil y doctor, the Roscoe­ disorder
7. See, for example, Ann Voda, "A Journey to the Center of the l "Postmenopausal Hormone Therapy and Mortality." New be what Hacking calls an interactive kind? Does
Jones do some reading on the internet about ADHD this mean it isn't a real disease?
Cell," in Menopause, ed. Callahan, 160-93. England journal of Medicine 337 (1997)· 1389-91 .
They learn that ADHD is syndrome of attention
prob­ 3. Do you think Matt has a disea
lems and hyperactivity that affects boys four se? Does it need
times to be treated? Why?

1. Describe and critically evaluate Boorse and . 3. According to Callahan, is menopause a disease? Angell M. The epidemic of mental illness:
Hacking's claims that diseases are (at least in Would Boorse and Hacking agree? Why ? w hy Elliott C. A new way to be mad [Internet). The Atlantic;
[Internet}? The New York Review of Book
some sense) real. Which do you prefer and why? s; 23 December 2000. Available from: http://www.
June 2011, pp. 20-2. Available from: http://ww
w. theatlantic.com/magazine/archive/2000/12/a-new­
2, Does Hacking's concept of interactive �ind fulr nybo oks.c om/a rticles/ar chives/2011 /jun/23/
or partly map onto Boorse's concept of illness epidemic-mental-illness-why/. Date accessed way-to-be-rnad/4671/. Date accessed: 7 June 2012.
: 7
Why? June 2012.

'

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