MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES
RESEARCH REVIEWS 9: 21–26 (2003)
INVOLUNTARY STERILIZATION OF PERSONS WITH
MENTAL RETARDATION: AN ETHICAL ANALYSIS
Douglas S. Diekema*
Departments of Pediatrics & Medical History and Ethics, University of Washington, Seattle, Washington
Children’s Hospital and Regional Medical Center, Seattle, Washington
Legitimate concerns on the part of parents and guardians may lead
to requests for sterilization of a mentally retarded person in their care. At
the same time, mentally retarded persons must be protected from actions
that do not serve their best interests. This paper will review the history of
involuntary sterilization in the United States and evaluate the ethical argu-
ments that are relevant to decisions about involuntary sterilization. While
other, less permanent forms of contraception might be acceptable, invol-
untary sterilization ought not be performed on mentally retarded persons
who retain the capacity for reproductive decision-making, the ability to raise
a child, or the capacity to provide valid consent to marriage. Mentally
retarded persons who lack capacity in those three areas should be consid-
ered for involuntary sterilization only when the procedure is necessary,
sterilization would serve the best interests of the mentally retarded person,
less intrusive and temporary methods of contraception or control of men-
struation are not acceptable alternatives, and procedural safeguards have
been implemented to assure a fair decision-making process.
© 2003 Wiley-Liss, Inc.
MRDD Research Reviews 2003;9:21–26.
Key Words: mental retardation; sterilization; involuntary sterilization;
informed consent; competence
T
he issue of involuntary surgical sterilization of persons
with mental retardation and developmental disabilities
remains controversial. Historically, the involuntary ster-
ilization of specific classes of persons has led to significant abuses.
On the other hand, parents or legal guardians of persons with
mental retardation may have legitimate and important reasons
for seeking sterilization on behalf of their children and wards.
While most parents have reservations about seeking sterilization
of a mentally retarded son or daughter, the fear of pregnancy
may be even greater, prompting many parents to consider ster-
ilization as an option. Various surveys suggest that approximately
half of all parents of mentally retarded children had considered
or would consider sterilization for their child [Passer et al., 1984;
Bambrick and Roberts, 1991; Patterson-Keels et al., 1994].
Parents of children with mental retardation cite the fear of
pregnancy, fear of sexual abuse, and uncertainty about the
efficacy of other birth control methods as reasons for considering
sterilization procedures [Van der Merwe and Roux, 1987; Bam-
brick and Roberts, 1991; Patterson-Keels et al., 1994]. These
concerns are frequently coupled with the belief that the child or
young adult would never be able to sustain a marriage or care for
a child [Wolf and Zarfas, 1982; Bambrick and Roberts, 1991;
Patterson-Keels et al., 1994]. The desire to control menstruation
© 2003 Wiley-Liss, Inc.
for purposes of menstrual hygiene or because of the mentally
retarded child’s fear of bleeding may also be a factor in request-
ing hysterectomy over tubal ligation, especially for parents of
children with increased severity of mental retardation [Passer et
al., 1984]. The parents of a mentally retarded male may wish to
avoid creating parental and support obligations that he cannot
fulfill.
The distinction between compulsory, voluntary, and in-
voluntary sterilization is an important one [Calibey, 1981].
Compulsory sterilization occurs when legislation requires the
sterilization of certain individuals to accomplish societal pur-
poses. Voluntary sterilization represents the free and uncoerced
choice of a competent individual to limit his or her ability to
have children in the future [Calibey, 1981]. Involuntary steril-
ization occurs when an individual who is incapable of providing
consent is subjected to a sterilization procedure. For the sake of
clarity, the term sterilization refers to surgical methods of con-
traception that are not readily or reliably reversible.
This paper will briefly review the history of involuntary
sterilization in the United States, discuss the determination of
capacity and the ethical principle of autonomy as they relate to
the sterilization of mentally retarded persons, and argue that
involuntary sterilization is difficult to justify among those men-
tally retarded persons who either presently or will in the future
possess the capacity for reproductive decision-making, the ca-
pacity to raise a child, or the capacity to provide valid consent
for marriage. I will conclude with a discussion of the conditions
under which involuntary sterilization might be justified for those
persons with mental retardation who do not possess and never
will possess any of those capacities.
BRIEF HISTORY OF INVOLUNTARY
STERILIZATION IN THE UNITED STATES
The issue of involuntary sterilization has been a topic of
considerable moral, legal, and political debate in the United
States, and public attitudes have evolved significantly over the
past 100 years. During the late nineteenth and early twentieth
*Correspondence to: Douglas S. Diekema, Emergency Services, CH-04, Children’s
Hospital and Regional Medical Center, PO Box 5371, 4800 Sand Point Way NE,
Seattle, Washington 98105. E-mail: diek@u.washington.edu
Received 5 December 2002; Accepted 11 December 2002
Published online in Wiley InterScience (www.interscience.wiley.com).
DOI: 10.1002/mrdd.10053
century, the eugenics movement strongly
influenced policy regarding sterilization.
Involuntary sterilization was inspired by
social Darwinism and the false belief that
most social ills resulted from characteris-
tics transmitted across generations by
those who were genetically “unfit,” a
group that included the mentally re-
tarded, the poor, and those who had
committed crimes. It was also widely
held that these persons were sexually
promiscuous—inflamed by “unguided
sexual passion”—and therefore repro-
duced at higher rates than the rest of the
population, passing their “defects” to fu-
ture generations [Reilly, 1987; Park and
Radford, 1998]. A variety of methods
were employed to control the reproduc-
tion of persons within these “unfit”
groups, including institutionalization of
retarded women during their reproduc-
tive years, state laws forbidding marriage
of persons with mental retardation or
certain illnesses and traits, and male cas-
tration [Reilly, 1987].
The early 20th century saw the in-
troduction and refinement of safer surgi-
cal techniques for sterilization. Vasec-
tomy and salpingectomy offered
alternatives to gonadectomy and hyster-
ectomy [Sharp, 1907]. Beginning in
1907, states began to pass laws that al-
lowed, and in some cases required, the
involuntary sterilization of those with de-
velopmental disabilities and mental retar-
dation. Within 10 years, 17 states had
passed sterilization laws [Reilly, 1987].
The justification for these laws relied on
the eugenic argument that society would
be better off if certain individuals were
not able to reproduce. A 1934 Kentucky
Law Journal article articulated this view:
Since time immemorial, the criminal and defective
have been the “cancer of society.” Strong, intelli-
gent, useful families are becoming smaller and
smaller; while irresponsible, diseased, defective
families are becoming larger. . ..To prevent this
race suicide we must prevent the socially inade-
quate persons from propagating their kind, i.e., the
feebleminded, epileptic, insane, criminal, diseased,
and others [Skinner, 1934].
Eugenicists predicted that involuntary
sterilization laws would reap great eco-
nomic and social benefits leading to a
higher level of civilization [Larson and
Nelson, 1992].
Despite the enthusiasm with which
state legislatures pursued involuntary
sterilization laws, the courts proved less
receptive. Until 1927, all eugenic steril-
ization laws that reached the courts were
declared unconstitutional as cruel and
unusual punishment, violations of due
process, or violations of equal protection
[Burgdorf and Burgdorf, 1977]. How-
22 MRDD RESEARCH REVIEWS
ever, in 1927, the eugenic basis for in-
voluntary sterilization received strong
support when the U.S. Supreme Court
upheld the state of Virginia’s decision to
involuntarily sterilize “mentally defec-
tive” persons who were housed in state
institutions. The Court considered the
case of Carrie Buck, a 17-year-old insti-
tutionalized woman described as “feeble-
minded,” the daughter of a “feeble-
minded” mother, and herself the mother
of a “feeble-minded” infant. In Buck vs.
Bell, Justice Holmes argued:
Beginning in 1907,
states began to pass laws
that allowed, and in
some cases required, the
involuntary sterilization
of those with
developmental disabilities
and mental retardation.
Within 10 years, 17
states had passed
sterilization laws
[Reilly, 1987]. The
justification for these
laws relied on the eugenic
argument that society
would be better off if
certain individuals were
not able to reproduce.
The judgment finds. . .that Carrie Buck ‘is the
probable potential parent of socially inadequate off-
spring, likewise afflicted, that she may be sexually
sterilized without detriment to her general health
and that her welfare and that of society will be
promoted by her sterilization. . ..’ It is better for all
the world, if instead of waiting to execute degen-
erate offspring for crime, or to let them starve for
their imbecility, society can prevent those who are
manifestly unfit from continuing their kind. The
principle that sustains compulsory vaccination is
broad enough to cover cutting the Fallopian tubes.
Three generations of imbeciles are enough [“Buck
v. Bell,” 1927].
In the years following Buck v. Bell the
number of states with sterilization laws
increased to 30. By 1960, more than
60,000 men and women had been ster-
ilized in accordance with state laws
[Reilly, 1987].
● INVOLUNTARY STERILIZATION
Public attitudes regarding forced
sterilization began to change toward the
end of the Second World War, partially
in response to the way eugenic principles
had been applied by Nazi Germany [Bay-
les, 1978]. Though involuntary steriliza-
tions significantly decreased in number, it
wasn’t until the 1960s that states began to
repeal involuntary sterilization laws.
Some states passed legislation requiring
that judicial review and other conditions
be satisfied before an incompetent indi-
vidual could be sterilized.
Though not overturned by the Su-
preme Court, Buck vs. Bell came to be
seen as bad law on both factual and con-
stitutional grounds [Burgdorf and Burg-
dorf, 1977]. Justice Holmes’ three gener-
ations of imbeciles proved to be nothing
of the kind. Carrie Buck’s mother was
only mildly mentally retarded, and Car-
rie’s child was not mentally retarded at all
[Burgdorf and Burgdorf, 1977]. Perhaps
most importantly, Carrie was a young
woman of normal intelligence who had
been institutionalized not because of
mental retardation, but to hide the shame
of her pregnancy, a pregnancy that re-
sulted from rape [Gould, 1985]. The rec-
ognition of these abuses was recently em-
braced in a formal apology by Virginia
Governor Mark R. Warner issued 75
years after the Supreme Court’s decision
in Buck v. Bell in which he denounced
the eugenics movement as “a shameful
effort in which state government never
should have been involved” [Branigin,
2002].
People also began to think differ-
ently about procreative rights. As early as
1942 the U.S. Supreme Court in Skinner
v. Oklahoma argued that the right to
procreate was fundamental, requiring a
compelling state interest to justify inter-
fering with it [“Skinner v. Oklahoma,”
1942]. The societal harms envisioned by
the eugenicists, if these exist at all, were
not sufficient to justify either the viola-
tion of an individual’s fundamental right
to make reproductive decisions without
the interference of others or the uncon-
sented bodily invasion inherent in invol-
untary sterilization [“In re Grady,”
1981]. Sterilizations in most state institu-
tions came to a halt, and the mid-1960s
represented the low point for numbers of
persons subjected to involuntary steriliza-
tion in the United States [Reilly, 1987;
Smith and Polloway, 1993].
As involuntary sterilization became
difficult for parents and guardians to ob-
tain on behalf of mentally retarded indi-
viduals in the 1960s, parents of non-in-
stitutionalized retarded females began to
file lawsuits requesting the sterilization of
AND MENTAL RETARDATION ● DIEKEMA
their daughters on the grounds that it was
essential to the welfare of the mentally
retarded female (as protection from the
fear of menstruation, the risks of preg-
nancy, and the burdens of parenthood)
and to the family caring for her (by re-
ducing the burdens of dealing with men-
struation and possibly being forced to
rear the mentally retarded woman’s baby)
[Reilly, 1987]. Rather than perceiving
sterilization as a burden, they claimed
that some mentally retarded individuals
might benefit from it [Barron, 1981]. At
the same time, the U.S. Supreme Court
enlarged the fundamental right to per-
sonal privacy to include the right to
choose birth control [“Griswold v. Con-
necticut,” 1965; Derouin, 1982], a right
that would seem to include sterilization.
Courts now had to weigh their duty to
protect the incompetent person against
the right of that person to be sterilized
[Reilly, 1987]. This most recent period is
marked by a sense that involuntary ster-
ilization can be justified only on the basis
of the well-being of the mentally re-
tarded individual.
The development of contracep-
tive technology has clearly influenced
the debate surrounding sterilization of
persons with mental retardation. Effec-
tive and long-term methods of contra-
ception offer reversible alternatives to
sterilization. For some persons with
mental retardation, 30-day cycles of
oral contraceptives taken under super-
vision will prove adequate. Monthly
intra-muscular injections (Lunelle) can
accomplish contraception in those who
will not take pills or cannot be super-
vised closely enough to assure that they
take them. Norplant, which may be
more effective than other forms of con-
traception, is reversible, easily moni-
tored, and involves a nearly painless 10
minute office procedure with a dura-
tion of effectiveness up to 5 years
[Greydanus et al., 2001]. Transdermal
contraceptive patches are also now
available, requiring weekly applications
[Ortho Evra—A Contraceptive Patch,
2002]. Finally, although they may re-
quire sedation for insertion into a men-
tally retarded individual, long-term
progestin-releasing intrauterine devices
can provide from 1 to 10 years of con-
traception [A Progestin-releasing Intra-
uterine Device for Long-Term Contra-
ception, 2001]. Each of these methods
offers advantages and disadvantages, but
also provide a range of options without
the invasiveness or irreversibility of
sterilization.
MRDD RESEARCH REVIEWS ● INVOLUNTARY STERILIZATION
RESPECT FOR AUTONOMY
AND INVOLUNTARY
STERILIZATION
Respect for autonomy is the moral
duty to respect the right of others to hold
views, make choices, and take actions
without interference. If the goal of ethics
is to do the right and good thing, it
follows that respecting the autonomy of
those affected by the decision is impor-
tant. In most cases, the person who will
undergo sterilization, if capable of under-
standing and making such a decision, is
the one who is best able to determine
whether sterilization would be the right
and good thing for him or her. While
generally considered to be a negative ob-
ligation (i.e., we have the obligation not
to interfere with the decisions and actions
of others), the principle of respect for
autonomy may include positive obliga-
tions (i.e., the obligation to enable and
enhance the ability of others to make
choices and act upon them) [Beauchamp
and Childress, 2001].
Involuntary sterilization clearly
represents a violation of the principle of
respect for autonomy if performed
against the wishes of a fully competent
agent. Among those mentally retarded
persons who retain the capacity to make
their own decision about sterilization,
the principle of respect for autonomy
would militate against involuntary steril-
ization. Those competent to give in-
formed consent should have their unco-
erced decision respected [Denekens et
al., 1999]. On the other hand, the rigid
application of the principle of respect for
autonomy does not make sense for indi-
viduals who are not capable of exercising
competent and intentional decision-
making and action. One cannot respect
autonomy if it does not exist in the other
person. For persons with limited or ab-
sent autonomy in the reproductive
realm, other moral considerations be-
come essential in making decisions about
sterilization. Thus, the determination of
capacity or competence is crucial to the
discussion about the sterilization of per-
sons with mental retardation.
COMPETENCE FOR
REPRODUCTIVE DECISION-
MAKING IN MENTALLY
RETARDED PERSONS
Competence refers to “the ability
to perform a task” [Culver and Gert,
1982]. Since a person may be competent
to perform some tasks but not others,
determinations of competence must al-
ways be judged for the particular task or
decision under consideration [Brock and
Buchanon, 1990]. An individual’s com-
AND MENTAL RETARDATION
petence can vary over time, with changes
in circumstances, or with the complexity
of a decision.
Mental retardation by itself does
not establish incompetence. Persons de-
fined as mentally retarded form a diverse
group of individuals with a wide range of
mental and social abilities who differ
from “normal” persons only in degree
[Irvine, 1988; Bourguignon, 1994]. Fur-
thermore, IQ by itself does not provide
an assessment of an individual’s ability to
function in or adapt to a given situation.
Because intelligence is a crude measure,
the functional capacities of persons with
similar IQ may vary considerably
[Petchesky, 1979]. While some mentally
retarded persons may have difficulty with
abstract concepts or the communication
of instructions or facts, they may be ca-
pable of problem solving and coping by
using effective strategies that differ from
those of “normal” people [Bourguignon,
1994]. Incompetence and incapacity
should never be assumed, and capacity
should always be linked to the specific
subject of the decision to be made [Bay-
les, 1978].
Persons with mental retardation
may fall into one of three categories with
regard to sterilization decisions. They
may retain full capacity to make decisions
regarding reproductive issues, they may
have limited capacity to make such deci-
sions, or they may lack any capacity to
make such decisions. We will now ex-
plore the meaning of each of these cate-
gories, along with a discussion of how
this categorization relates to the ethical
issues surrounding involuntary steriliza-
tion.
Mentally Retarded Persons With
Full Capacity
As discussed above, determinations
of competence must be task specific. The
determination of capacity to make deci-
sions regarding reproductive issues (in-
cluding sterilization) will minimally re-
quire the ability to understand the
therapy or procedure in question (con-
traceptive method or sterilization), delib-
erate about the risks and benefits of each
(including the risk of pregnancy), con-
sider alternatives, and make a decision on
the basis of these considerations
[Beauchamp and Childress, 2001]. The
person must be capable of understanding
sterilization, contraception, pregnancy,
child-birth, and parenting sufficiently to
enable informed consent. I would also
argue that the fully autonomous person
must possess the capacity to bear respon-
sibility for the consequences of these de-
cisions. The capacity to raise a child is
● DIEKEMA 23
central to the notion of autonomy as it
relates to the question of contraception
and sterilization.
Membership in the moral commu-
nity requires that one fulfill moral obli-
gations and accept responsibility for the
consequences of one’s choices. Morally
speaking, it makes little sense to talk
about having a right to reproduce with-
out also recognizing that the right carries
with it an obligation to take responsibil-
ity for any offspring that may result. In
other words, when we talk about
whether a person is capable of refusing
contraception, we must ask not simply
whether they understand the nature of
the therapy or procedure, but whether
they are capable of understanding and
coping with the process of pregnancy,
labor, delivery, and, perhaps most impor-
tantly, raising a child. Steinbock argues
that someone incapable of rearing a child
would not have reproductive autonomy
in any meaningful sense, nor would they
have a meaningful interest in reproduc-
ing [Steinbock, 1994]. Since those who
choose to procreate incur obligations to-
ward their offspring [Cartwright, 1994],
the moral right to procreate must be ac-
companied by the ability and willingness
to bear responsibility for the child
[Cinelli and Nunnenkamp, 1986].
One must remain respectful of the
difficulty of determining and predicting
whether someone might make an ade-
quate parent. Mental retardation does not
by itself establish the inability to parent.
The judgment cannot be made simply on
the basis of objective criteria such as in-
telligence, education, or wealth [Burg-
dorf and Burgdorf, 1977]. Incapacity
would require a showing that the person
is not now or ever will be capable of
parenting adequately [“In re Hayes,”
1980; “In re Grady,” 1981; Areen,
1989]. Justice requires that the standard
for parenting ability that we erect for the
mentally retarded person be no more de-
manding than that applied to others
[Cartwright, 1994]: Can the individual
care for a child without causing signifi-
cant harm through abuse or neglect of
basic needs? The idea is not to require
mentally retarded persons to achieve
some abstract ideal of parenthood, but to
determine whether the prospective par-
ent could satisfactorily provide the basic
needs of a child (love and affection, shel-
ter, clothing, food, safety, and stimula-
tion).
Some persons with mild and even
moderate mental retardation are capable
of living independently, understanding
the meaning of sterilization and its impli-
cations, and raising a child. These persons
24 MRDD RESEARCH REVIEWS
should be treated as autonomous agents
who are allowed to either consent to a
sterilization procedure or refuse one
[American Academy of Pediatrics, 1999].
Any request for sterilization should be
closely scrutinized to assure that the in-
dividual is competent to make such a
decision, truly understands the decision
and its consequences, and has not been
subject to manipulation or coercion. Re-
specting these persons requires that their
potential vulnerability be recognized and
that every effort be made to assure a truly
autonomous choice.
Mentally Retarded Persons With
Limited Capacity
Some individuals will retain lim-
ited capacity with regard to reproduction
even if they are not fully competent. For
purposes of this discussion, I will consider
those with limited capacity to be individ-
uals who lack either the capacity to make
decisions regarding reproductive issues or
the capacity to raise a child, but not both.
For example, a mentally retarded person
may lack the ability to raise a child, but
possess the capacity to make decisions
regarding reproductive issues. Involun-
tary sterilization is difficult to justify in
these individuals, though some restric-
tion on their reproductive abilities might
be justified in well-defined circum-
stances.
Individuals who are capable of
making decisions regarding reproduction
should be permitted to consent to steril-
ization under the same conditions as the
fully autonomous person with mental re-
tardation. Sterilization should not be per-
formed without the consent of a mentally
retarded person who has decision-mak-
ing capacity. The principle of respect for
autonomy would not allow for involun-
tary sterilization of a competent person
without significant justification. If the
person is capable of understanding steril-
ization, proceeding with the operation
over the objections of the person can be
traumatic emotionally [Irvine, 1988] and
would not be justified in light of the
availability of less permanent and intru-
sive methods of contraception. How-
ever, the inability to raise a child should
permit a surrogate decision-maker to au-
thorize reversible forms of contraception.
But what of a person who lacks
sufficient understanding to make deci-
sions about sterilization, but appears ca-
pable of raising a child? Because compe-
tence judgments are subjective and
imperfect determinations, sterilization
should be avoided in such cases. Having
demonstrated some level of autonomy in
the reproductive arena, i.e. the capacity
● INVOLUNTARY STERILIZATION
to care for a child, this person might very
well achieve full autonomy at some point
in the future. Until that time, less perma-
nent means of contraception should be
used.
Finally, I would argue that men-
tally retarded persons who otherwise lack
reproductive autonomy but who are ca-
pable of consenting to marriage should
not be subject to sterilization procedures.
These individuals lack decision-making
capacity, so cannot give valid consent for
the procedure. They also lack the capac-
ity to raise a child by themselves. How-
ever, if they retain the capacity to give
meaningful consent to marriage, they can
create for themselves the ability to raise a
child with the help of a spouse. Many
persons with normal intelligence would
be significantly challenged and even in-
capable of raising a child alone, yet func-
tion adequately as parents with aid from
others. Justice demands that mentally re-
tarded persons be accorded similar treat-
ment. Surrogate decision-makers have an
obligation to evaluate whether future cir-
cumstances might allow the mentally re-
tarded person to assume responsibility for
the care of a child. Until that time, it
might be reasonable to impose some
form of contraception. However, a per-
son who cannot consent to sterilization,
but retains the capacity to marry and care
for a child with reasonable assistance
from a spouse or other support persons
should not be sterilized, since sterilization
would potentially foreclose important fu-
ture opportunities [Bayles, 1978;
Chakraborti and MacDonald, 1984].
Mentally Retarded Persons Who
Permanently Lack Capacity
I have argued that mentally re-
tarded persons with competence to make
decisions regarding reproduction and
sterilization should be permitted to give
their voluntary, uncoerced consent to
sterilization. I have also argued that in-
voluntary sterilization should not be con-
sidered for persons with mental retarda-
tion who retain the capacity for
reproductive decision-making and refuse
sterilization, or for those who possess or
may in the future possess the capacity to
parent a child or consent to marriage.
There remains the group of mentally re-
tarded persons who permanently lack
competence in any area related to repro-
duction (decision-making, child-rearing,
consent for marriage). These persons
clearly lack the capacity to make deci-
sions on their own behalf, and must rely
on others to make reproductive decisions
for them. Because of the permanence of
sterilization, the burden of proof must lie
AND MENTAL RETARDATION ● DIEKEMA
with surrogate decision-makers and those Second, those seeking to sterilize a
performing the procedure to provide mentally retarded person should provide
clear and convincing evidence that the clear and convincing evidence that ster-
candidate will permanently lack any ca- ilization is in the best interests of the
pacity to make reproductive decisions or individual [“Stump v. Sparkman,” 1978;
parent a child with the assistance of a “In re Hayes,” 1980; “In re Grady,”
spouse [Derouin, 1982]. Furthermore, 1981; American College of Obstetrics
assessments of this magnitude should be and Gynecology, 1988]. The benefits of
made with the assistance of professionals the procedure to the individual should
with skill and experience in evaluating justify any risks and the loss of reproduc-
the capacity of persons with mental re- tive ability.
tardation [American Academy of Pediat- The best interest principle is a pa-
rics, 1999]. It seems fair to assume that if tient-centered standard. Whether or not
a mentally retarded person is and will an intervention is in the patient’s interest
remain incapable of providing for his or depends upon how it affects his or her life
her own needs, protecting his or her own [Brock and Buchanon, 1990]. Identifying
interests, and keeping him or herself safe, the best interests of the mentally retarded
he or she will also be incapable of pro- person may not always be easy. It seems
viding for a child [Bayles, 1978]. A per- clear that the welfare of mentally retarded
son with that level of functional incapac- individuals who lack reproductive auton-
ity is also not likely to be capable of omy will not be served by treating them
meaningful consent to marriage. This as if they were normal and capable of
group might include those persons who exercising all the rights of normal persons
are themselves lifetime dependents and [Sherlock, 1980]. They do, in fact, differ
those with IQ below 50 or whose retar- in measurable behavioral ways [Thomp-
dation is complicated by severe emo- son, 1978].
tional or physical handicaps [Perrin et al., There is no question that contra-
1976]. ception may clearly benefit a person with
While permanent lack of capacity mental retardation, just as millions of
is a necessary condition for involuntary “normal” persons choose contraception
sterilization of a mentally retarded per- because of the benefits it provides to their
son, it does not by itself provide sufficient lives. Even those opposed to sterilization
justification. Serious psychological dam- of mentally retarded persons would often
age can result when these persons are go to great lengths to assure that some of
sterilized against their wishes, even when these persons not get pregnant. Surrogate
those wishes do not represent competent decision-makers have a responsibility to
wishes [Dowben and Heartwell, 1979]. protect vulnerable individuals in their
The procedure still must be justified. The care from an unwelcome pregnancy.
basis of that justification lies in a demon- While this can usually be achieved with
stration that the procedure is necessary, other contraceptive methods, Gillon has
sterilization would serve the best interests argued that it is not reasonable to argue
of the mentally retarded person, less in- that sterilization would never be in the
trusive and temporary methods for con- best interest of the retarded person if it is
traception or control of menstruation are reasonable to argue that it is sometimes in
not acceptable alternatives, and proce- the best interest of a mentally normal
dural safeguards have been implemented person [Gillon, 1987].
to assure a fair decision-making process Contraception can be used to bring
[Walters, 1976]. the mentally retarded person more fully
First, the procedure must be ur- into the communal relationship by af-
gently necessary. If the goal of steriliza- fording them the opportunity to grow
tion is to prevent pregnancy, then it and relate more freely than they would
ought not be performed on individuals be allowed to if pregnancy or impregna-
who cannot engage in sexual intercourse tion were a concern [Gaylin, 1976; Bar-
or achieve conception [“In re Hayes,” ron, 1981; Dugan, 1993]. The caretakers
1980; “In re Grady,” 1981; Areen, of a mentally retarded male might allow
1989]. Sterilization should not be per- him more freedom to explore relation-
formed prior to the time it is actually ships absent close supervision knowing
needed. This optimizes the accuracy of that he cannot father a child. By enhanc-
evaluating the degree and permanence of ing opportunity and freedom for the re-
the individual’s incompetence and allows tarded person, contraception can clearly
a longer period of time to consider novel provide significant benefit to some men-
methods of contraception that might tally retarded individuals by enhancing
achieve the same end as sterilization [“In their ability to function in community
re Grady,” 1981]. In no case should ster- with others [Cinelli and Nunnenkamp,
ilization be performed prior to puberty. 1986]. One could argue that if it is mor-
MRDD RESEARCH REVIEWS ● INVOLUNTARY STERILIZATION AND MENTAL RETARDATION
ally appropriate for parents to perma-
nently restrict activity and behavior be-
cause of disability, sterilization should
also be justifiable. However, we must
also recognize that fertility and sexuality
are not identical. Sterilization does not
provide protection against sexual abuse
or sexual activity [Petchesky, 1979]. If
restrictions would continue because of
the need to protect a mentally retarded
person from sexual abuse, then steriliza-
tion might not be as easily justified.
The third requirement for steriliza-
tion is that there be clear and convincing
evidence that the best interests of the
person cannot be served acceptably by
less intrusive and permanent means [“In
re Hayes,” 1980; “In re Grady,” 1981;
Rousso, 1984; Areen, 1989]. In some
cases, alternatives may not provide as fa-
vorable a long-term benefit/risk profile
as sterilization. For those with no possi-
bility of future reproductive decision-
making capacity or child-rearing capacity
(with the help of a spouse or others), it is
not clear that reversible means are always
a superior long-term choice [Steinbock,
1994]. In cases where alternative contra-
ceptive methods are not clearly superior,
it may be legitimate to consider the needs
of caretakers. Parental interests are espe-
cially relevant when the individual in
question is and always will be unable to
understand and cope with menstruation
and pregnancy, unable to raise a baby,
unlikely to get pregnant short of being
victimized [Irvine, 1988], and where an
individual has been and will indefinitely
continue to be dependent on his or her
parents [Perrin et al., 1976; Krais, 1989].
Finally, prior to any sterilization
procedure, procedural safeguards should
assure a fair and good decision on behalf
of the mentally retarded person. These
should include a comprehensive evalua-
tion by an independent professional and
lay group regarding medical, psycholog-
ical, social, behavioral, and genetic data
on the patient and to determine that in-
terests of the parent or guardian are
aligned with the interests of the retarded
person [Perrin et al., 1976; Areen, 1989].
In most jurisdictions, statutory require-
ments may be present and court autho-
rization may be required. Where the sur-
rogate decision-makers for the mentally
retarded person are family members,
their decisions should generally be re-
spected when the above conditions have
been met. On the other hand, we cannot
simply assume that the caretaker’s inter-
ests are the same as those of the retarded
individual. If caretakers would bear the
burden of child-rearing should preg-
nancy occur, their interest in preventing
● DIEKEMA 25
pregnancy is valid and the request for
contraception should be respected
[American College of Obstetrics and Gy-
necology, 1988]. However, sterilization
requires a higher level of justification be-
cause of the greater harm that can result.
If the interests of those requesting invol-
untary sterilization appear to be in con-
flict with the interests of the mentally
retarded person, review by an objective
third party is essential [American College
of Obstetrics and Gynecology, 1988].
Finally, every effort should be
made to honestly communicate to the
mentally retarded person the true nature
of the procedure and the reasons for it.
They should be included in discussions at
a level appropriate to their understanding
and functional capacity.
CONCLUSION
Legitimate concerns may lead par-
ents or guardians to request the steriliza-
tion of a mentally retarded person. On
the other hand, involuntary sterilization
may not always represent the best inter-
ests of a mentally retarded person and
should be performed only in exceptional
cases. Involuntary sterilization ought not
be performed on mentally retarded per-
sons who possess (or might at some fu-
ture time possess) the capacity for repro-
ductive decision-making, the ability to
raise a child, or the capacity to provide
valid consent to marriage. In mentally
retarded individuals who permanently
lack capacity in all three of those areas
involuntary sterilization is justified only
when the procedure is necessary, steril-
ization would clearly serve the best inter-
ests of the retarded person, less intrusive
and temporary methods of contraception
or control of menstruation are not ac-
ceptable alternatives, and appropriate
procedures have been followed to assure
a good and just outcome for the mentally
retarded person.
What must remain clear is that the
primary goal is to identify the right and
good action for the retarded person. It is
not to seek what is best for society or for
the caretakers of the mentally retarded
person, but rather what is best for the
person for whom sterilization is being
considered. That is not to say that the
interests of others should not be consid-
ered. Rather, the interests of others be-
come most important when they corre-
spond to the interests of the retarded
person or, failing that, at least do not
interfere with the legitimate interests of
the retarded person. When interests con-
flict, the interests of the mentally retarded
person should prevail. f
26 MRDD RESEARCH REVIEWS
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AND MENTAL RETARDATION ● DIEKEMA