Conceiving Harm: Disability Discrimination in Assisted Reproductive Technologies
56 Pages Posted: 5 Jun 2002
Applying the concept of disability discrimination to decisions about medical treatment poses profound challenges for both civil rights law and bioethics. To the extent this challenge has been examined in the legal literature, the focus has largely been limited to the application of the Americans with Disabilities Act (ADA) to decisions about life-sustaining treatment. Yet, at the other end of life's continuum - decisions about the use of medical procedures to help individuals conceive a child (collectively known as "assisted reproductive technologies," or ARTs) - the legal implications of disability-related eligibility criteria remain largely unexplored. This is surprising, as some ART practitioners take a variety of disability-related factors into account in patient selection decisions. For example, some physicians refuse to provide ARTs to patients who are HIV-positive, to patients with other chronic medical conditions, or to patients with certain genetic diseases. The extent of disability-related denials of ARTs is impossible to determine, but it is undoubtedly significant. Indeed, until February 2002, the American Society for Reproductive Medicine expressly supported the exclusion of HIV-positive patients from ART programs.
Applying the ADA to denials of treatment by ART practitioners raises particularly challenging legal and ethical issues. On the one hand, the danger that physicians will inappropriately deny treatment to patients with disabilities is especially worrisome in the context of ARTs, given the widespread stigma associated with reproduction by individuals with disabilities. On the other hand, patients' disabilities may sometimes have potentially devastating implications for any child resulting from treatment, including the possibility that the child will be born with life-threatening or seriously debilitating impairments. Some physicians have strong ethical objections to helping patients become pregnant in the face of such risks.
This article develops a framework for applying the ADA to disability-based denials of ARTs that addresses these competing considerations. In recognizing risks to the future child as a potential defense to an ADA claim, it rejects the view of some commentators that such risks are relevant to reproductive decisions only if the child is likely to suffer so much that she would prefer not to exist. Instead, it proposes that, when patients' disabilities create significant risks to the future child, the question should be how the risks and benefits of the patient's requested treatment compare to those associated with other available reproductive and parenting options. This comparative analysis would be required only when the patient's disabilities create a significant risk that the child's health will fall below a minimum threshold; indirect risks to the child resulting from patients' disabilities would not be taken into account.
While the approach recommended in this article would permit physicians to deny ARTs to patients with disabilities in some circumstances, it also would invalidate many disability-based selection criteria currently in use.
Keywords: disability, ADA, assisted reproductive technologies, in vitro fertilization, HIV, genetics
JEL Classification: K39
Suggested Citation: Suggested Citation