Mental retardation and reproductive freedom
Sterilization raises difficult ethical questions
Concerned that their loved ones’ mental capacities may not be able to keep up with their physical maturity, parents and guardians of adults and adolescents with mental retardation sometimes seek to have these people undergo medical sterilization procedures to prevent what they perceive as the potential burden of unanticipated parenthood.
Over the past decade, several surveys indicate that approximately half of all parents of mentally retarded children either have considered or would consider sterilization for their children.1-3
"Fear of pregnancy, fear of sexual abuse, uncertainty about the efficacy of other birth control methods, the desire to control or eliminate menstruation for either the purpose of hygiene or the child’s fear of the bleeding — these are frequently the reasons that parents seek these procedures," says Douglas S. Diekema, MD, MPH, associate professor in the departments of pediatrics and medical history and ethics at the University of Washington in Seattle and Washington Children’s Hospital and Regional Medical Center. "These reasons are usually coupled with the belief that the child would never be capable of raising a child or sustaining a marriage."
Diekema recently published a review of research into these procedures in the journal Mental Retarda-tion and Developmental Disabilities Research Reviews.4
But the request for such procedures raises difficult ethical questions for health care providers.
It also recalls a particularly dark time in the nation’s past. In the late 19th and early 20th centuries, the eugenics movement strongly influenced legislation in many states, resulting in laws requiring the forcible sterilization of the poor, the mentally disabled, and people convicted of crimes.
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.
In 1927, the Supreme Court’s decision in the Carrie Buck (Buck v. Bell) case cleared the way for states to forcibly sterilize those it deemed "unfit" for parenthood. By 1960, more than 60,000 men and women had been involuntarily sterilized in accordance with state laws.
It wasn’t until the end of World War II, when the world became aware of the atrocities committed by the Nazis in Germany, that involuntary sterilizations began to decrease in number and, in the 1960s, states began to repeal such laws. Some states took the additional step of requiring judicial review and other conditions before an individual deemed incompetent to make medical decisions could be sterilized.
Physicians are justifiably concerned that conducting such procedures at the behest of a person’s guardian, or, even at that person’s request, could start a slippery slope down the path of determining who should retain the capacity for reproductive freedom.
Legitimate reasons
Although sterilization procedures performed on people with mental disabilities have a troubled past, most parents and guardians who pursue them today do so with the intent of helping improve the person’s life, says David Coulter, MD, president-elect of American Association for Mental Retardation and a specialist in pediatric neurology at Children’s Hospital of Boston.
"There are different reasons such procedures are pursued in men and in women," he notes. "But normally, it is sought for persons who require ongoing care and supervision — either by their guardians or in an institution — and not people who are capable of living independently or consenting to a sexual relationship."
Some women and girls may have difficulty coping with menstruation, for example; the pain and the bleeding may frighten them, and parents see the procedure as a means of ending their discomfort and improving the person’s life, Coulter says. "It seems, to them, a simple solution — wouldn’t it be better if they could just prevent it from occurring in the first place?"
There have been instances in which female residents of residential facilities assaulted by staff members then become pregnant, he notes. And some families see sterilization as a way to prevent the possibility of the additional burden of pregnancy should this occur.
"This is a difficult area to argue," Coulter says. "Of course, we can say that just should not happen, and we should always be able to protect people who are residents in these institutions. But, it does happen. And pregnancy or ending a pregnancy can be risky, invasive, and very traumatic for some individuals."
With men and boys, it may be that parents fear the results of a sexual relationship they believe the person is not able to understand. In some cases, they are trying to prevent sexually aggressive or inappropriate behavior.
Although, all of these efforts may be well intentioned, Coulter believes a desire for sterilization still indicates on some level that people are less inclined to consider the rights of persons with mental retardation on par with those of other people.
Though there may be some unique situations where sterilization is the optimal choice, he notes that most of the problems cited could be resolved through less invasive and permanent means.
For women, in particular, there are a number of contraceptive products that are available that would be nonpermanent, less invasive, and long acting, so that the person’s life would not be disrupted.
If menstruation is a problem, it might be that the person’s environment could be modified to help them cope as opposed to eliminating menstruation altogether.
Health care providers who receive requests to perform these procedures should carefully consider all available options and consider the needs, wishes, and abilities of the individual people on a case-by-case basis.
"If at all, it should only be considered as a last resort," Coulter notes.
Balancing wishes and best interest
Under our current ethical principles, it is the health care providers’ responsibility to ensure that any contraceptive measures be taken in the best interest of the mentally retarded person; and that decisions be based on the person’s mental capacity and needs rather than the needs and wishes of people caring for or assuming responsibility for that person, Diekema adds.
When considering a request for a particular patient, not only is it important for providers to determine the person’s overall level of competence and decision-making capacity, but also his or her specific capacity to understand and make decisions related to reproduction.
The fact that a person is unable to live independently and is not considered competent to assume total responsibility for decisions about health care, does not mean he or she necessarily is incapable of understanding and making decisions about reproductive issues.
Competence essentially means "the ability to perform a task," Diekema explains. Since a person may be competent to perform some tasks but not others, determinations of competence always must be judged for the particular decision under consideration.
"Persons who are deemed mentally retarded are a diverse group of individuals with a wide range of mental and social abilities who differ from normal’ persons only in degree," he says.
To decide whether a person is competent to make decisions about reproductive issues, caregivers and health care providers should consider whether the person is able to understand the procedure in question, the available options — such as contraceptive therapy — and be able to deliberate about the risks and benefits of each.
The person’s capacity to raise a child also must be considered, Diekema adds. Morally, he says, it makes little sense to talk about the right to reproduce without also talking about the responsibilities this would incur.
Some people with mental retardation do have the capacity to bear and raise children; and some people, though they would not be able to do so alone, might be able to do so with assistance in the future.
Diekema argues that a mentally retarded person who is competent to make decisions regarding reproductive matters should be able to choose sterilization if they desire it, but should not be subject to involuntary sterilization.
"I would further argue that involuntary sterilization ought not to be performed on persons who retain the ability to raise a child or to provide consent to marriage," he says. "Only if those three things are permanently absent should involuntary sterilization even be considered. Reversible forms of birth control could be used instead."
It’s also essential — but difficult — to determine that a person lacking these capabilities now also will not have them in the future, Diekema emphasizes. "No sterilization procedure should be performed before puberty and no procedure should be performed until there exists absolute certainty that, over time, the person will not achieve these abilities."
Reasons for sterilization
Even if mentally retarded people lack the ability to comprehend or make decisions regarding their own welfare, it still should be the responsibility of people seeking a sterilization procedure to show why such a measure is in the person’s best interests as opposed to alternatives, Diekema argues.
While permanent lack of capacity is a necessary condition for involuntary sterilization, that alone is not a justification, he explains.
"I would say the following must also be true: It must be urgently necessary; there should be clear and convincing evidence that the procedure is in the best interest of the person, and clear and convincing evidence that the best interests of the person cannot be served with less intrusive and permanent means," he says, also noting the widespread availability of numerous forms of long-term contraceptive methods available for women.
Serious psychological damage can result from decisions to sterilize a person against their wishes — even when those wishes cannot be considered competent, he adds.
However, it also may be true that such procedures offer people opportunities for freedom and interaction in their communities that they might not be able to have otherwise, and this also should be taken into consideration.
Even people opposed to sterilization of mentally retarded persons often would go to great lengths to assure that individuals lacking the capacity to understand pregnancy or parenthood or to participate in child rearing not become pregnant, he notes. It is the responsibility of surrogate decision makers to protect people in their care from an unwanted pregnancy.
Effective contraceptive measures might afford a mentally retarded person more freedom and privacy to interact with other people. By enhancing opportunities and freedoms, contraception can provide significant benefit to mentally retarded individuals, just as it can for people deemed to be of "normal" intelligence, Diekema says.
This usually can be achieved with nonpermanent methods of contraception, but there may be some cases where sterilization would more represent a mentally retarded person’s best interest, just as it might for other people.
It is vital that surrogate decision makers not confuse fertility with sexuality. Sterilization would not provide protection from sexual abuse or sexual activity. If restrictions on the activities of a person with mental retardation would continue to prevent the possibility of sexual abuse, then sterilization is not as easily justifiable.
"There need to be safeguards that ensure a fair and inclusive decision-making process — this would include a comprehensive evaluation by an independent professional and lay group regarding the medical, psychological, social, behavioral, and genetic data available on the patient, and to determine that the best interests of the mentally retarded person are aligned with the interests of the decision maker," he says. "The primary safeguard should be that the decision should be one that is reviewed by an independent third party, such as an ethics committee."
State laws permitting such practices also vary, Coulter says.
Some state laws prohibit such procedures without the person’s valid consent, he adds. If the person is unable to give it, the procedure cannot be performed. In many other situations, a court order also is required.
Even if the opinion of an ethics committee is sought, the additional court hearing can provide an important venue for a deliberative process to ensure that the decision is in the best interests of the individual person, Coulter says.
"It should not be left up to the judgment of just the physician and the family," he says.
References
1. Passer A, Rauth J, Chamberlain A, et al. Issues in fertility control for mentally retarded female adolescents: II. Parental attitudes toward sterilization. Pediatrics 1984; 73:451-454.
2. Patterson-Keels I, Quint E, Brown D, et al. Family views on sterilization for their mentally retarded children. J Reprod Med 1994; 39:701-706.
3. Bambrick M, Roberts G. The sterilization of people with a mental handicap: The views of parents. J Ment Def Res 1991; 35:353-363.
4. Diekema DS. Involuntary sterilization of persons with mental retardation: An ethical analysis. MRDD Res Reviews 2003; 9:21-26.
For more information
- The Arc of the United States/American Association for Mental Retardation. Joint Position Statement on Sexuality, 2002. Available on-line at: www.thearc.org.
- American Academy of Pediatrics. Committee on Bioethics. Policy Statement: Sterilization of Minors with Developmental Disabilities (RE9849). J Am Acad Pediatrics 1999; 104:337-340.
Sources
- David Coulter, MD, President-elect of the American Association for Mental Retardation; Pediatric Neurology Specialist at Children’s Hospital of Boston, 300 Longwood Ave., Boston, MA 02115.
- Douglas S. Diekema, MD, MPH, Associate Professor, Department of Pediatrics, Department of Medical History and Ethics, University of Washington and Washington Children’s Hospital and Regional Medical Center, 4800 Sand Point Way N.E., Seattle, WA 98105.
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