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PEDIATRICS Vol. 104 No. 2 August 1999, pp. 337-340
AMERICAN ACADEMY OF PEDIATRICS:
Sterilization of Minors With Developmental Disabilities
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ABSTRACT |
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Recommendation
References
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Sterilization of persons with developmental disabilities has often been performed without appropriate regard for their decision-making capacities, abilities to care for children, feelings, or interests. In addition, sterilization sometimes has been performed with the mistaken belief that it will prevent expressions of sexuality, diminish the chances of sexual exploitation, or reduce the likelihood of acquiring sexually transmitted diseases. A decision to pursue sterilization of someone with developmental disabilities requires a careful assessment of the individual's capacity to make decisions, the consequences of reproduction for the person and any child that might be born, the alternative means available to address the consequences of sexual maturation, and the applicable local, state, and federal laws. Pediatricians can facilitate good decision-making by raising these issues at the onset of puberty.
Parents or other legal guardians approach pediatricians,
pediatric surgeons, obstetrician-gynecologists, or other health care professionals about the possibility of surgical sterilization of
children, adolescents, and young adults with developmental disabilities. This policy statement updates the previous American Academy of Pediatrics (AAP) statement entitled "Sterilization of
Women Who Are Mentally Handicapped," published in 1990.1 That statement was published as a companion to policy from the American
College of Obstetricians and Gynecologists.2 This revised
policy relies on the concepts developed in the earlier statements, but
applies to males and females.
The topic of sterilization, primarily of girls and women, has
stirred considerable moral, political, and legal debate and action in
the United States. At the beginning of the 20th century, in conjunction
with prevalent ideas about the social utility of "improving" human
genetic stock (eugenics), sterilization was encouraged or even required
by state laws and practiced in ways now regarded as discriminatory and
abusive. Women were prevented from reproducing based on physical
disability, behavioral characteristics, or membership in socially
disfavored groups or because of cognitive disabilities that did not
necessarily prevent them from fulfilling parental
roles.3-5
However, in 1942, in accord with more enlightened social and biological
perspectives, support for reproductive freedom was growing. In that
year, the US Supreme Court declared human procreation to be a
fundamental right, prompting major changes in the legal landscape.6 Obtaining authorization to sterilize
individuals, including those with developmental disabilities, became
substantially more difficult, if not prohibited in some
jurisdictions.7 Beginning in the 1970s, regulations
prevented the use of federal monies to perform sterilization procedures
on those deemed mentally incompetent.4 The complexities of
federal rules, state laws, and judicial rulings have created a
confusing and contradictory array of restrictions on surgical
sterilization of persons with developmental disabilities.
More recently, ethical precepts and public policy have emphasized the
importance of providing the least restrictive life alternatives for
persons with cognitive and other disabilities or disorders. The result
has been proscriptions on limits on reproduction, including sterilization. At the same time, expanded social opportunities have
increased the likelihood that individuals with developmental disabilities will engage in sexual contact that can lead to pregnancy. A proportion of these pregnancies will endanger the health of the
pregnant individual or be unwanted. Some will be the result of sexual
exploitation or assault. A few parents and other guardians retain an
interest in male sterilization either to simply preclude impregnation
of others or with a belief that it may help prevent sexually aggressive
behavior by males. Sterilization of females is similarly sought to
prevent pregnancy, especially when those responsible for a person with
severe mental disability believe that she cannot adequately care for a
child.
Persons who have adequate mental capacity to make a decision about
their health and health care are entitled to do so based on their own
interpretations of their interests, without undue influence from health
care professionals, family members, or others. Thus, the first step in
decisions about sterilization of a person with cognitive disabilities
generally involves assessing the individual's capacity to decide
matters specifically concerning reproduction. Such assessments should
be made with the help of professionals skilled in and experienced with
evaluating the capabilities of persons with disabilities. The
assessment should focus on the individual's ability to understand
appropriately presented information about the possibility of
reproducing, the consequences of procreation, and the benefits and
risks of, and alternatives to, pregnancy and childbirth. In actual
practice, evaluating a person's ability to provide consent may be
quite complex. Ultimately, competence is a legal attribute, and legal
standards for determination of competence vary greatly. Some states
require judicial review with representation of the individual by an
attorney and guardian ad litem, and a competency evaluation. In those
states without such a legal requirement, in the case of an elective
procedure with permanent consequences, all possible efforts should be
made to conduct the determination of competence fairly. Among the
issues that may need to be considered are language and cultural
background, quality of information provided to the person (clarity,
completeness, lack of bias), and fluctuations in a person's
comprehension resulting from, for example, various stressors and
medications.8 A person who can demonstrate adequate
capacity to comprehend the facts and associated concepts and express
choices about these matters can provide informed consent or refusal for
contraception, including sterilization.
When the individual involved lacks the ability to consent to or refuse
sterilization, the question becomes whether a surrogate may ethically
authorize the procedure. Some individuals believe in an inherent
freedom or legal (constitutional) right to reproduce, regardless of
abilities to appreciate what it means to become a parent. From this
perspective, sterilization will rarely, if ever, be acceptable.
A decision to have a child or to permanently prevent the possibility of
becoming a parent is best made with full consideration of the burdens
and benefits of parenthood. The burdens of pregnancy may be substantial
for some with developmental disabilities and concomitant physical
disorders. Pregnancy, birth, and parenthood also involve emotional
stress resulting from the physical demands of labor, sleep loss, and
the responsibility of caring for a helpless infant whose needs and
wants are often difficult to discern. Of course, these difficulties
must be balanced against the benefits of parenthood, including sharing
love with the child and the joys of watching an individual grow and
develop. In addition, some individuals with limited developmental
capacity who desire to father or bear children may be able to assume
that responsibility if provided with adequate social support.
Pediatricians may have a role in encouraging communities to develop the
resources necessary to provide sufficient support.
At times, the parties to decision-making may face a situation in which
sterilization is the likely secondary result of recommended treatment
of disorders of the reproductive system or anatomically adjacent areas
(eg, benign or malignant tumors of the urogenital system or refractory
painful uterine bleeding). Under these circumstances, the decision to
undertake therapy that has a risk of causing infertility should be
based on the medical condition without regard to the developmental
disabilities of the patient.
No ethical analysis of possible sterilization of persons with
severe cognitive disabilities should fail to consider the interests of
their potential children. Children deserve adequate physical care,
emotional succor, and stimulation. Children require protection from
hazards and special attention when disease develops. Thus, decisions to
refrain from or proceed with sterilization must consider the abilities
of the individuals and those with whom they routinely interact to
provide for the needs of the children who may be born.9
Much of the past difficulty with sterilization of those with
disabilities has arisen from the alleged value to society of eugenically eliminating "undesirable" or "defective"
individuals from the population. These efforts were notable for being
based on stereotypes and prejudice. In addition, as methods of
contraception that provide alternatives to sterilization increase the
available options, permanent sterilization becomes increasingly
difficult to justify. This is especially true when there is uncertainty about the adolescent's eventual capacities and interests.
Nevertheless, third parties have rightful interests in these matters
when it is clear that the persons with disabilities who are involved
can assume little or no responsibility for their own care during
pregnancy or for their children after birth. Family members, other
guardians, or those providing custodial care have substantive and
reasonable concerns about how their own resources would be affected by
new child care responsibilities.
The age of consent, including that for surgical procedures, varies
from state to state. Some minors may be old enough under applicable
laws to be considered eligible to agree to sterilization if otherwise
capable of doing so. In such cases, a careful clinical assessment of
decision-making capacity must be performed by a professional skilled in
and experienced with evaluating the capabilities of persons with
disabilities, such as a psychiatrist, licensed psychologist, social
worker, or pediatrician. Adolescents who have been declared by judges
to be mentally competent for the purpose of accepting or refusing
sterilization are entitled to make whatever decision they believe
furthers their own interests. In some states, laws or court precedent
forbid procedures aimed primarily at accomplishing sterilization solely
on the authorization of parents or other legal guardians consulting
with appropriate physicians and surgeons. When the involved parties
believe surgical sterilization to be the best option, application to
the courts may provide the only lawful means to accomplish that goal.
Physicians and surgeons should be familiar with the law that applies to
the jurisdictions where they practice.
Consideration of sterilization will ordinarily not arise until
sexual maturation, although issues of sexuality may come up when the
child is much younger. Nevertheless, the development of secondary
sexual characteristics presents opportunities for pediatricians to
discuss the myriad consequences of puberty with patients, parents, and
other guardians. This will allow for a review of facts, exploration of
fears, and discussion of resources available for education, behavior
modification, and available medical alternatives for prevention of
reproduction.
Many requests for sterilization of individuals with developmental
disabilities are based on confusion between desires to permanently prevent reproduction versus wishes to avoid other consequences of
sexual maturation.10 Very often, the latter concerns predominate and may be addressed with different, less intrusive interventions. For example, difficulties with menstrual hygiene frequently, but not always, improve with developmentally appropriate educational programs. The inconvenience of problems dealing with normal
menstrual bleeding is generally an inappropriate indication for
surgical sterilization. Abnormal menses (eg, excessive flow or bleeding
for many days each cycle) should be treated as it would be for a
patient without mental disability. Similarly, distress of the caregiver
over expressions of sexuality does not justify consideration of
sterilization. Most individuals with developmental disabilities respond
to efforts to teach socially acceptable demonstration of affection. In
some instances, behavior modification may be useful. Some parents and
other caregivers request sterilization by orchiectomy for the purpose
of decreasing sexual aggressiveness in males. There is little valid
evidence that surgical castration accomplishes the desired goal; trials
of behavioral and, if warranted, pharmacological management deserve
primary consideration.
Many who care for persons with developmental disabilities are
understandably concerned about the sexual exploitation of those for
whom they have responsibility. Although sterilization of vulnerable girls usually will prevent conception and pregnancy, it will not substitute for the establishment and enforcement of a safe environment that minimizes the chance for exploitation, nor will it prevent exposure to sexually transmitted diseases.11 Sexual abuse avoidance training may be an important tool in preventing exploitation of persons with developmental disabilities.
Even when the principal goal of sterilization is the prevention of
reproduction, less permanent means of contraception may be available.
The use of barrier methods, pills, injections, intrauterine devices, or
subdermal implants depends on the functional abilities of the person
with developmental disability and the reactions of the patient and the
caregivers to nonsurgical methods to prevent pregnancy.12
The consequences of the long-term use of hormonal means of
contraception are not fully known, and the known complications must be
carefully balanced against the hazards and permanency of surgery. The
presence of a developmental or cognitive disability alone does not, in
itself, justify either sterilization or its denial.
SOCIAL CONTEXT
INTERESTS OF THOSE WHO MIGHT REPRODUCE
INTERESTS OF OTHERS
LEGAL CONSIDERATIONS
PRACTICAL ISSUES
RECOMMENDATIONS
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Abstract
Recommendation
References
COMMITTEE ON BIOETHICS, 1998-1999
Robert M. Nelson, MD, PhD, Chairperson
Jeffrey R. Botkin, MD, MPH
Marcia Levetown, MD
Kathryn L. Moseley, MD
John T. Truman, MD
Benjamin S. Wilfond, MD
LIAISON REPRESENTATIVES
Alessandra (Sandi) Kazura, MD American Academy of Child and
Adolescent Psychiatry
Watson A. Bowes, Jr, MD American College of Obstetricians and
Gynecologists
Ernest Krug III, MD American Board of Pediatrics
SECTION LIAISON
Donna A. Caniano, MD Section on Surgery
G. Kevin Donovan, MD, MLA Section on Bioethics
CONSULTANT
Joel E. Frader, MD
LEGAL CONSULTANT
Dena S. Davis, JD, PhD
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FOOTNOTES |
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The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
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ABBREVIATIONS |
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AAP, American Academy of Pediatrics.
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REFERENCES |
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Abstract
Recommendation
References
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American Academy of Pediatrics, Committee on Bioethics
Sterilization of women who are mentally handicapped.
Pediatrics.
1990;
85:868-871
[Abstract/Free Full Text] - American College of Obstetricians and Gynecologists. Sterilization of Women Who Are Mentally Handicapped. ACOG Committee Opinion 63. Washington, DC: ACOG; 1988
- Reilly PR. The Surgical Solution: A History of Involuntary Sterilization in the United States. Baltimore, MD: Johns Hopkins University Press; 1991
- Elkins TE, Hoyle D, Darnton T, McNeeley G, Heaton CS The use of a societally based ethics advisory-committee to aid in decisions to sterilize mentally-handicapped patients. Adolesc Pediatr Gynecol. 1988; 1:190-194 [Medline]
- Buck v Bell, 274 US 200(1927)
- Skinner v Oklahoma, 316 US 535(1942)
- Holder AR. Legal Issues in Pediatrics and Adolescent Medicine. 2nd ed. New Haven, CT: Yale University Press; 1985
- Applebaum PS, Grisso T Assessing patient's capacities to consent to treatment. N Engl J Med. 1988; 319:1635-1638 [Abstract]
- Brock DW. Reproductive freedom: its nature, bases, and limits. In: Monagle JF, Thomasma DC, eds. Health Care Ethics: Critical Issues. Gaithersburg, MD: Aspen Publishers Inc; 1994:43-61
- Rauh JL, Dine MS, Biro FM, Rauh TD Sterilization for the mentally retarded adolescent: balancing the equities/the Cincinnati experience. J Adolesc Health Care. 1989; 10:467-472 [CrossRef][Medline]
- Blackburn M Sexuality, disability and abuse: advice for life ... not just for kids. Child Care Health Dev. 1995; 21:351-361 [CrossRef][Medline]
- Steinbock B Reproductive rights and responsibilities. Hastings Cent Rep. 1994; 24:15-16
Pediatrics (ISSN 0031 4005). Copyright ©1999 by the American Academy of Pediatrics
Statements of reaffirmation:
- AAP Publications Retired or Reaffirmed, October 2006
- American Academy of Pediatrics
Pediatrics 2007 119: 405.[Extract] [Full Text] [PDF]
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Policy Statement—AAP Publications Retired and Reaffirmed
Pediatrics 2009 124: 845.[Extract] [Full Text] [PDF]
The following policy statement has been revised:
- Sterilization of Women Who Are Mentally Handicapped
- Committee on Bioethics
Pediatrics 1990 85: 868-871.[Abstract] [PDF]
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  J. E. Wilkinson and M. C. Cerreto Primary Care for Women with Intellectual Disabilities J Am Board Fam Med, May 1, 2008; 21(3): 215 - 222. [Abstract] [Full Text] [PDF]
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 A. Albanese and N. W Hopper Suppression of menstruation in adolescents with severe learning disabilities Arch. Dis. Child., July 1, 2007; 92(7): 629 - 632. [Abstract] [Full Text] [PDF]
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 N. A. Murphy, E. R. Elias, and for the Council on Children With Disabilities Sexuality of Children and Adolescents With Developmental Disabilities Pediatrics, July 1, 2006; 118(1): 398 - 403. [Abstract] [Full Text] [PDF]
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