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Medicine, Health Care and Philosophy 4: 305309, 2001.

2001 Kluwer Academic Publishers. Printed in the Netherlands.

Scientific Contribution

Ethical boundary work: Geneticization, philosophy and the social sciences

Adam M. Hedgecoe
Department of Science and Technology Studies, University College London, Gower Street, London WC1E 6BT, UK
(Phone: 020 7679 2959; Fax: 020 7916 2425; E-mail: a.hedgecoe@ucl.ac.uk; http://www.ucl.ac.uk/sts/)

Abstract. This paper is a response to Henk ten Haves Genetics and Culture: The Geneticization thesis. In it, I
refute Ten Haves suggestion that geneticization is not the sort of process that can be measured and commented on
in terms of empirical evidence, even if he is correct in suggesting that it should be seen as part of philosophical
discourse. At the end, I relate this discussion to broader debates within bioethics between the social science and
philosophy, and suggest the need for philosophical approaches to take the social sciences seriously.

Key words: empirical research, geneticization, genetics, social sciences

Introduction ular dimensions and brings in new perspectives


in the debate on present-day genetics (Ten Have,
I would like to thank Henk ten Have for the oppor- 2001).
tunity to reply to his article Genetics and culture:
The geneticization thesis (Ten Have, 2001), which is The geneticization thesis cannot be falsified on the
itself, in part, a response to my own article Geneti- basis of empirical evidence since it is a philo-
cization, medicalisation and polemics (Hedgecoe, sophical interpretation of the self-understanding of
1998). This dialogue is important, not just because the todays human life and culture (Ten Have, 2001). He
topic of geneticization is central to how society deals suggests that attempts to assess geneticization in terms
with the new genetics, but also because the contrasts of empirical evidence fall into the trap of applying the
in approach between Professor Ten Have and myself mentality of the natural sciences (which are part of the
highlight important differences in the question of how problem) to a concept developed in the humanities,
bioethics as a research enterprise should be carried cultural sciences and philosophy.
out. But at the same time Ten Have wants the geneti-
In this response, I outline Ten Haves position cization thesis to tell us something about the real
regarding the geneticization thesis and follow this with world; it is not . . . [an] . . . ideal construct; it is about
my own views on how the topic of geneticization empirical reality (Ten Have, 2001). The geneticiza-
should be investigated. Finally, I relate this discussion tion thesis therefore has to maintain a balancing act: it
to broader issues in the bioethics literature, concerning cannot be judged in terms of empirical evidence, yet
the relationship between philosophy and the social at the same time it tells us something about empirical
sciences. There is much in Ten Haves article, his reality. What the concept of geneticization apparently
analysis of non-directiveness in genetic counselling for does is refocus our attention, away from personal
example, that I agree with however, and I will limit ethical topics such as the management and access
myself to discussing those points that distinguish our of genetic information, and towards broader societal
positions. issues such as the effect of genetic technologies on
our culture and self-perceptions. It snaps us out of
assumptions such as the only real problem with genetic
The geneticization thesis technology being how you apply it.
The core of Ten Haves argument is that critics of the
geneticization thesis are mistaken about what kind of The empirical critique
thing this concept is:
geneticization is not a new empirical phenomenon My own critique of the concept of geneticization (as
but a new theoretical concept that uncloses partic- currently conceived) is intended to produce a defini-
306 A DAM M. H EDGECOE

tion of this process which can be used for research and methods from the empirical sciences (ibid.) its
and which tells us something about the ethical implica- defenders make a surprisingly large number of empir-
tions of genetic technologies. I do not wish to abandon ical claims. For example, Ten Have states that the
the concept of geneticization, I merely wish to see it representation of genetics in the media creates . . .
revised in a productive way. Ten Have takes excep- the impression that knowledge about many individual
tion to my use of empirical research, carried out by genes is knowledge about how the genome functions
Celeste Condit, which showed two things: the first in people (Ten Have, 2001). In whom is this impres-
study suggests that claims that the blueprint metaphor sion created? If it is just in Ten Have himself, then this
encourages reductionistic and discriminatory thinking is interesting but limited. If he means in the public at
in the public mind are at best simplistic and at worst large, then this is important, but it is also an empirical
misguided (Condit, 1999b). The second proposes that claim, for which no evidence is offered. It seems a
one of the tenets of the geneticization thesis, that form of special pleading to insist that the geneticiza-
modern media representations are more deterministic tion thesis is a philosophical discourse, but that it also
and geneticized than those in previous eras, is incorrect proposes empirical points which are somehow immune
(Condit, Ofulue and Sheedy, 1998). In many ways, from empirical scrutiny.
modern public discussions about genetics are more This is not to say that the proponents of the geneti-
sophisticated and less deterministic than those which cization thesis do not offer evidence for their claims.
have gone before.1 Ten Have cites Nelkin and Lindee (1995) and their
study of the cultural representations of the gene. In
The role of empirical evidence my opinion, they do indeed show that the gene is
a very powerful image (Ten Have, 2001). Where I
If Ten Have is right, then these studies have missed the differ is in the suggestion that these same authors show
point since geneticization is not the kind of thing you that the gene has had a growing impact on popular
can judge in empirical terms. The obvious response to culture (ibid.) to the extent that the gene has been
this is, if this is the case, why do authors writing about transformed . . . it has become the key to human rela-
the geneticization thesis make so many empirical state- tionships . . . it has become the essence of identity and
ments by which I mean claims about empirical reality the source of social difference (Nelkin and Lindee,
which can be judged on the basis of evidence? There 1995, p. 198). Nelkin and Lindee cannot show this,
are two points to note here: the first is that evidence in since they offer no alternative vision of human rela-
no way implies numbers. It so happens that both the tionships, identity and social difference to compare the
studies I quoted in my 1998 article used quantitative genetic version with. They do not carry out a similar
data, but that is a result of the questions asked rather analysis of the icons in popular culture from twenty
than a requirement of the methodology used to critique years ago, to contrast with their modern results. They
the geneticization thesis. In my own research, I rely have no grounds for claiming that genetic explanations
almost exclusively on qualitative data. are more popular now, since they do not show how
The second point is that Ten Have seems to assume popular they were in the past.
that if you require empirical proof, then you must be This problem concerning the growth of geneticiza-
operating from within the framework of the natural tion is also present in Abby Lippmans work. However
sciences. This is plainly mistaken, as any historian or convincing her analysis of the threats and influences
archaeologist could tell you. If a claim is made in, of genetic technology, Lippman insists that this is a
for example, history, then the historian is expected problem that is getting worse: geneticization is an
to back it up with evidence. If the claim concerns ongoing process . . . (Lippman, 1991, p. 19), or an
the economy of Roman Britain, then the evidence ever growing tendency (Lippman, 1998, p. 64).
will quite probably involve numbers. This does not Whatever geneticization is, according to her there is
mean that the historian has succumbed to the natural more of it about now than there has been. And since
sciences. Ironically Ten Have implicitly accepts that geneticization is about definitions, medical interven-
historians require evidence when he defends Michel tions and priorities, its putative increase is all around
Foucaults work against medical historians who claim us, and should be noticeable by us. If geneticization
that his works do not take into account many relevant is a philosophical thesis, why does it make so many
data from the history of medicine (Ten Have, 2001). claims about empirical reality?
Foucaults work is apparently immune from the usual
empirical requirements of history since he operates at Geneticization as a research tool
the level of philosophical discourse.
Yet as I have already suggested, if the geneti- I believe that Ten Have is mistaken about what kind of
cization thesis cannot be tested with the instruments thing the current concept of geneticization is. Rather
E THICAL BOUNDARY WORK 307

than it being a philosophical thesis, I think it is better told by certain scientists are too limited and that we
seen as an activists rallying cry, a way of raising need to look at a more complex picture, where genes
public and political consciousness about the possible are only part of the story. Evidence for this complexity
drawbacks of genetic technologies and information. can be gathered from the natural sciences.
Lippman explicitly calls her 1998 article on geneti- The rejection of empirical evidence from the social
cization The Politics of Health, and I suggest that sciences is more to do with tensions between philo-
she is less concerned with geneticizations ontological sophical and sociological approaches to bioethics,
status as part of a philosophical discourse than with the than with a rejection of empirical evidence. Ten
impact it has on making people aware of problems that Have is engaged in what sociologists of science
need to be faced. But this is not that same thing as Ten term boundary work. This is when scientists erect
Haves concept, introduced into scholarly debate rhetorical boundaries between science and society to
as a product of the humanities, cultural sciences and demarcate their own areas of expertise and limit the
philosophy. As a means of examining the ethical issues interventions of those not deemed sufficiently knowl-
in genetics, the current geneticization thesis is flawed edgeable. Similar work takes place between proper
due to its moral circularity. By definition, geneticiza- science and pseudo-sciences (Gieryn, 1995). Ten
tion is morally unwelcome; Lippman refers to it as a Haves boundary work restricts and limits the kinds of
process of colonisation, for example (Lippman, 1994, approaches one can take in analysing geneticization,
p. 14). Certain authors (for example Hoedemakers and privileging philosophy and excluding research from
Ten Have, 1998; or Simpson and Sherwin, 1999) have within the social sciences. Such a strategy makes sense
then used geneticization to analyse the ethical implica- in the light of what has been termed the social science
tions of genetic testing, reaching the conclusion that critique of bioethics (Callahan, 1999).
this kind of intervention is morally wrong. This is At one end of the spectrum are critics like Barry
unsurprising, since if you start from a position where Hoffmaster who attacks theory-heavy medical ethics
genetic technologies are bad, then any assessment of (what he calls the applied ethics model) and claims
those technologies is likely to conclude that they are that:
indeed bad (See Hedgecoe, 1999 for fuller discus-
sion). This is part of the problem Ten Have admits, It is time to admit the terminal condition of applied
that the current concept of geneticization is ambiguous ethics . . . as long as medical ethics remains theory
and There is a definite need of conceptual clarifica- centred, philosophers working in the field will
tion (Ten Have, 2001). In my own Ph.D. research, continue to do what the Chinese, in a marvelously
focused on geneticization in medicine, I have used a apt phrase, call playing with emptiness (Hoff-
stripped down definition which states that geneti- master, 1992, p. 1429).
cization takes place when an explicit link is made
At the other end are those like Daniel Callahan, co-
between a condition and a stretch of DNA. This main-
founder of the Hastings Center, who although still
tains much of what Lippman is interested in (e.g. the
working on philosophical bioethics is:
role of genetic explanations for disease) without indu-
cing the kind of circularity which results from defini- amenable to ways of thinking about bioethics drawn
tions which explicitly claim geneticization is ethically from richer veins than provided by . . . analytic
unwelcome. philosophy . . . The social sciences surely offer
knowledge pertinent to ethics (Callahan, 1999,
p. 285).
Philosophy and the social sciences
Positioned somewhere in the middle are a number
It is telling that when Ten Have objects to the use of of authors who feel that it is time to reconsider the
empirical evidence to assess the geneticization thesis, relationship between traditional philosophical ethics
it is only evidence from the social sciences that he and social science approaches, such as sociology and
is talking about. Researchers in the field of geneti- ethnography (DeVries and Conrad, 1998; Kleinman,
cization are quite happy to accept empirical results 1999; Hope, 1999; Nelson, 2000; Zussman, 2000). My
from the natural sciences, even genetics, if it supports own position has much in common with these centrist
the idea that current debates about disease are too authors. If bioethics is to deal with the issues that
simplistic. Lippman asks what if biologic reality will result from the completion of the human genome
is discordant with the hyperbole in professional and project, philosophers need to accept that the social
popular magazines and isolated genes are not causes? sciences can play a vital role in assessing the ethical
(Lippman, 1992, p. 1470). The geneticization thesis is and societal impact of science. This means bioethics
not anti-science, it is just saying that the current stories has to find a way of incorporating empirical evidence
308 A DAM M. H EDGECOE

into its considerations, instead of regarding it as threat. excellent works in the social sciences on the same
At the same time, it is plainly nonsense to suggest that topic which add a dimension normally overlooked
philosophical bioethics is exhausted and should play in the philosophical literature (e.g. Bowker and Star,
no role in the debates to come (see Zussman, 2000 for 1999). Social scientists have specialised in exploring
a critique of Hoffmasters extreme position). the issues raised by institutions such as laboratories
Exactly how the social sciences and philosophy (Latour and Woolgar, 1986; Rabinow, 1996). To
should combine to form a new bioethics is much suggest that this work would not be relevant to a philo-
harder to see. Clearly, the linear model that currently sophical discussion of the institutions which support
operates does a disservice to both disciplines: geneticization because it offers empirical evidence
about how institutions work, seems to be cutting off
The common picture of the relationship between ones nose to spite ones face. Finally, at the cultural
bioethics and the social sciences assigns responsi- level, there is an entire discipline anthropology
bility for accurately gathering the pertinent facts to dedicated to the empirical investigation of cultures.
epidemiologists, sociologists, anthropologists and In terms of genetics, research has already begun, for
their kin, and for assessing those facts to bioethicists example by looking at differences in attitudes towards
wielding explicitly normative techniques (Nelson, prenatal diagnosis and amniocentesis between cultures
2000, p. 13). (Rapp, 1993, 1998). Within the social sciences, there
This picture, where the social sciences act as hand- are huge resource available to philosophers interested
maiden to bioethics, ignores the value-laden nature in exploring the process of geneticization, resources
of data gathering, and runs the risk of undermining that will allow them to test their concepts and predic-
normative decisions based on such evidence. Nelson tions about how this process occurs, but also to revise
suggests that the bioethicist should embrace this their assumptions in the light of empirical evidence.
knowledge as a source of normative information to
expand his or here own analysis. Other suggestions for
a more pro-active role for the social sciences include: Acknowledgements
testing bioethicists consequentialist claims (Zussman,
2000); encouraging a more reflexive attitude towards The research for this paper was supported by the
researchers own values, and analysing the range and ESRC. I thank Jon Turney, Brian Balmer, John Waller
variety of alternative normative positions (Kleinman, and Mairi Levitt for comments on an earlier draft.
1999). This is only a beginning and it is likely to be
some time before the social sciences have a significant
impact on the way bioethics is done and visa versa. Note
But a crucial element in this programme is the accept-
1. These citations are of the final, published versions of
ance on the part of philosophical bioethics that it needs
Condits draft papers I cited in my original article. A book-
to acknowledge the validity of empirical evidence from length version of all this research can be found in Condit
the social sciences, and change its discourse in the (1999a), which combines both qualitative and quantitative
light of this evidence. The boundaries are high but it analysis.
is time they were breached.

Geneticization and the new bioethics References


Although I suspect it is unintentional, Ten Have Bowker, G.C. and S.L. Star: 1999, Sorting Things Out: Classi-
himself shows how we could begin to imagine a new fication and Its Consequences. Cambridge, MA: MIT Press.
bioethics in geneticization. He suggests that geneti- Callahan, D.: 1999, The Social Sciences and the Task of
cization can be studied on at least four different levels: Bioethics, Daedelus 128 (4), 275294.
conceptually, institutionally, culturally and philosoph- Condit, C.: 1999a, The Meanings of the Gene: Public Debates
ically (Ten Have, 2001). This latter area is obviously about Human Heredity. Madison: University of Wisconsin.
the preserve of the philosopher, but at all the other Condit, C.: 1999b, How the Public Understands Genetics:
levels, philosophers and social scientists can learn Non-Deterministic and Non-Discriminatory Interpretations
of the Blueprint Metaphor, Public Understanding of
from each other and work together. For example the
Science 8, 169180.
first level, the conceptual, would include investiga-
Condit, C., N. Ofulue and K. Sheedy: 1998, Determinism and
tion of the classification of diseases as genetic. The Mass Media Portrayals of Genetics, American Journal of
philosophy of medicine has a long history of research Human Genetics 62, 979984.
into classification (Hesslow, 1984), but there are also
E THICAL BOUNDARY WORK 309

DeVries, R. and P. Conrad: 1998, Why Bioethics Needs Lippman, A.: 1992, Led (Astray) by Genetic Maps: The
Sociology, in: DeVries and Subedi (eds.), Bioethics and Cartography of the Human Genome and Health Care, Social
Society: Constructing the Ethical Enterprise. New Jersey: Science Medicine 35 (12), 14691476.
Prentice Hall, pp. 233257. Lippman, A.: 1994, The Genetic Construction of Prenatal
Gieryn, T.F.: 1995, Boundaries of Science, in: Jasanoff et Testing: Choice, Consent or Conformity for Women?, in:
al. (eds.), Handbook of Science and Technology Studies. K.H. Rothenberg and E.J. Thomson (eds.), Women and Pren-
Thousand Oaks, CA: Sage, pp. 393443. atal Testing: Facing the Challenges of Genetic Testing. Ohio
Hedgecoe, A.: 1998, Geneticization, medicalisation and Pole- State University, pp. 934.
mics, Medicine, Healthcare and Philosophy: A European Lippman, A.: 1998, The Politics of Health: Geneticiza-
Journal 1 (3), 235243. tion Versus Health Promotion, in: Sherwin et al. (eds.),
Hedgecoe, A.: 1999, Reconstructing Geneticization: A The Politics of Womens Health: Exploring Agency and
Research Manifesto, Health Law Journal 7, 518. Autonomy. Philadelphia: Temple University Press, pp. 6482.
Hesslow, G.: 1984, What is a Genetic Disease? On the Nelson, J.L.: 2000, Moral Teachings from Unexpected Quar-
Relative Importance of Causes, in: L. Noredenfelt and B.I.B ters: Lessons for Bioethics from the Social Sciences and
Lindahl (eds.), Health, Disease, and Causal Explanations in Managed Care, Hastings Center Report 30 (1), 1217.
Medicine. Boston: Reidel. Rabinow, P.: 1996, Making PCR: A Story of Biotechnology.
Hoedemaekers, R. and H. ten Have: 1998, Geneticization: The Chicago: University of Chicago Press.
Cyprus Paradigm, Journal of Medicine and Philosophy 23 Rapp, R.: 1993, Sociocultural Differences in the Impact of
(3), 274287. Amniocentesis An Anthropological Research Report, Fetal
Hoffmaster, B.: 1992, Can Ethnography Save the Life of Diagnosis and Therapy 8 (Supp. 1), 9096.
Medical Ethics?, Social Science and Medicine 35 (12), Rapp, R.: 1998, Refusing Prenatal Diagnosis: The Meanings
14211431. of Bioscience in a Multicultural World, Science, Technology
Hope, T.: 1999, Empirical Medical Ethics, Journal of Medical and Human Values 23 (1), 4570.
Ethics 25, 219220. Sherwin, S. and C. Simpson: 1999, Ethical Questions in the
Kleinman, A.: 1999, Moral Experience and Ethical Reflection: Pursuit of Genetic Information: Geneticization and BRCA1,
Can Ethnography Reconcile Them? A Quandary for The in: S. Thompson and R. Chadwick (eds.), Genetic Informa-
New Bioethics , Daedelus 128 (4), 6997. tion: Acquisition, Access and Control. New York: Kluwer
Latour, B. and S. Woolgar: 1986 Laboratory Life: The Con- Academic/Plenum Publishing, pp. 121128.
struction of Scientific Facts, 2nd edn. Princeton: Princeton ten Have, H.: 2001, Genetics and Culture: The Geneticization
University Press. Thesis, Medicine, Health Care and Philosophy 4 (3), 295
Lippman, A.: 1991, Prenatal Genetic Testing and Screening: 304.
Constructing Needs and Reinforcing Inequalities, American Zussman, R.: 2000, The Contributions of Sociology to Medical
Journal of Law and Medicine 17 (1/2), 1550. Ethics, Hastings Center Report 30 (1), 711.