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Sterilization of Women with Developmental Delays

Sometimes, the mother of a woman with developmental delays requests that her daughter undergo a hysterectomy due to complications, distress, or pain with menses. These requests for involuntary sterilization of women with developmental disabilities pose ethical issues, especially in places that do not provide guidance on how to address care. Policy can provide guidance and protection, but often care providers do not have guidelines for these situations. Even when they do exist, they are patchworked.

Originally, patients were sent directly to the courts for an approval for the procedure. Obstetricians and gynecologists often argue that the decision to undergo hysterectomy procedures should lie with the patient, their guardian, and their physician. Some hospitals, however, require that the family obtain a court order due to the outcome of permanent sterilization. Now, however, some entities advocate that the ethics committee screen cases for potential conflicts and require court orders only in the cases where there are concerns about the intent or safety of the patient. Patients should not be denied access to this procedure, as this could be discriminatory; there must be safeguards in place to ensure that the patient is properly protected and given equal opportunity, such as comprehensive medical, psychological, and social evaluations, the guardian’s consent, the input of the patient regardless of their level of capacity, and proof that less drastic measures are inappropriate or unfeasible.

Families face conflict between the best interest and the autonomy of their child. The possibility of their young adult having children would be a significant impact on the parents, who may assume most responsibility for the child after it is born, and be unable to predict the level in involvement their young adult will have in child rearing. Hysterectomy procedures alleviate symptoms of severe menses and end the possibility of pregnancy. Opposingly, disabilities rights groups have adamantly protested involuntary sterilization. They claim that the medical model of disability leads the United States to devalue its disabled citizens and allow discrimination to persist. Intellectual disability in itself does not disqualify individuals from having families of their own. It is irresponsible to formulate a universal conception of individuals with intellectual disabilities and apply it to all instances where they are considering raising a family.

The legal system is particularly involved in sterilization of vulnerable populations, ruling in high level cases that sterilization was constitutional and justified, leading 32 states to enact forced sterilization laws that predominantly targeted minorities and vulnerable populations. The landmark case, Buck vs Bell (1927, which has never been overturned), ruled that institutions could sterilize members on the basis of their own health and the ‘welfare of society,’ with the underlying assumption that offspring of patients with cognitive impairments would also be developmentally delayed and burden society. Most states had repealed their mandatory sterilization laws by the late 1970s, and some states have apologized for enacting them in the first place.

The International Federation of Gynecology and Obstetrics (FIGO) proposed that if sterilization is the only medical objective, that a hysterectomy is inappropriate due to its disproportionate risks; however, if there is legitimate medical need and the patient has made an free, informed choice, there should be minimal barriers to attaining the procedure. Human Rights Watch emphasizes that sterilization laws are “overwhelmingly directed at women,” and forced sterilization is just one example of human rights violations against women and girls with disabilities. Often, forced sterilizations are due to prejudice such as racism, classism, and sexism, and even well-meaning reasons are considered with skepticism; “Women with disabilities are particularly vulnerable to forced sterilizations performed under the auspices of legitimate medical care or the consent of others in their name”.

Even seemingly voluntary sterilizations have been historically coerced, as pressures and sentiments still present from eugenic compulsory sterilization bled into the transition out of the eugenics movement as late as the 1970s and 1980s. Much of the eugenics movement was based in prejudiced and invalid research. Research such as Henry Goddard’s study on the Kallikak family that supported the inheritability of “feeble-mindedness” was noted as “a landmark event for the eugenicist movement,” but was widely questioned due to flaws in research methods and accuracy. Methods used to evaluate patients were touted as objective and included measuring IQ, but were also based on obviously invalid judgements such as children’s skull size and criminal’s facial symmetry.

The two most prominent consequences of policies on allowing or disallowing sterilization for patients who are cognitively impaired and cannot consent are the possibilities for abuse and the simultaneous risk of preventing needed care. There are already disproportionate restrictions on women’s health, and presenting another for this specific subset of women is unjust, as it is an option when medically appropriate for others. This also perpetuates the assumptions that patients with disabilities, especially cognitive disabilities, are unable to make decisions for themselves and therefore should be restricted in their decisionmaking. I disagree that an unequivocal ban on hysterectomies adequately addresses concerns from the disabilities community; we should instead focus on equal opportunity for treatment and promoted autonomy in the population of women with disabilities, especially in the area of women’s health.

Depending on the rationale, the procedure itself presents assumptions and questions about the scope and appropriate use of medical interventions. What are the limits of treatment? When, if ever, are treatments for convenience appropriate? Is convenience a factor in wellbeing? The fields in which this procedure take place are largely medical, so why or how should legal and political aspects affect the dialogue? We must simultaneously assure that vulnerable populations have appropriate access and are protected from abuse and reframe the issue that policy is addressing so that the values at hand are clear. Ethics would focus how we treat those with disabilities as a whole so that our society responsibly addresses their needs.

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Review: Sherwin B. Nuland Summer Institute in Bioethics