Alicia R. Ouellette

U.S. Medical Schools’ Compliance With the Americans with Disabilities Act: Findings From a National Study

Purpose Physician diversity improves care for underserved populations, yet there are few physicians with disabilities. The authors examined the availability of technical standards (TSs) from U.S. medical schools (MD- and DO-granting) and evaluated these relative to intent to comply with the Americans with Disabilities Act (ADA). Method Document analysis was conducted (2012–2014) on U.S. medical schools’ TSs for hearing, visual, and mobility disabilities. Primary outcome measures were ease of obtaining TSs, willingness to provide reasonable accommodations, responsibility for accommodations, and acceptability of intermediaries or auxiliary aids. Results TSs were available for 161/173 (93%) schools. While 146 (84%) posted these on their Web sites, 100 (58%) were located easily. Few schools, 53 (33%), had TSs specifically supporting accommodating disabilities; 79 (49%) did not clearly state policies, 6 (4%) were unsupportive, and 23 (14%) provided no information. Most schools, 98 (61%), lacked information on responsibility for providing accommodations, 33 (27%) provided accommodations, and 10 (6%) had students assume some responsibility. Approximately 40% allowed auxiliary aids (e.g., motorized scooter), but < 10% allowed intermediaries (e.g., sign language interpreter). Supportive schools were more likely to allow accommodations (P < .001), assume responsibility for accommodations (P < .001), and accept intermediaries (P < .002). DO-granting schools were more supportive for students with mobility disabilities. Conclusions Most medical school TSs do not support provision of reasonable accommodations for students with disabilities as intended by the ADA. Further study is needed to understand how schools operationalize TSs and barriers to achieving ADA standards.

Lessons across the Pond: Assisted Reproductive Technology in the United Kingdom and the United States

I. INTRODUCTION Scholars of differing political affiliation and the Presidents Council on Bioethics have called for regulation of assisted reproductive technology (ART) that would emulate many aspects of the regulatory system of the United Kingdom, in particular that of the Human Fertilisation and Embryology Authority. Specifically, scholars and the Council have argued that research in the U.S. involving gametes and human embryos lacks consistent oversight.1 While the Centers for Disease Control and Prevention (CDC) produces an annual ART success rate report,2 submission of data is guaranteed only by the promise that non-responders will be noted as such in the appendix of CDCs report, and most ART clinics publish success rates on the Internet in a much more recognized forum: website advertising. Moreover, U.S. law does not require licensing or accreditation of infertility programs and few regulations govern embryo research.3 While the large majority of clinics report their success rate data, and many follow practice standards and apply for accreditation from private agencies, these practices are strictly voluntary.4 Clinics failing to report their success rates face no legal consequence. In contrast, Great Britains Human Fertilisation and Embryology Authority (HFEA) has complete authority over fertility clinics and human embryo research in the United Kingdom.5 All clinics and labs using gametes or human embryos must receive a license from the HFEA.6 British clinics and embryo laboratories follow clear guidelines for data reporting, advertising, confidentiality, and clinic practices, which the HFEA enforces through powers granted by the British Parliament. While some American clinicians would argue that the HFEA restricts the freedom of clinics and researchers, the HFEA has shown the ability to adapt its policies to reflect changing technology while maintaining its moral bedrock: protecting the welfare of the child. In her benchmark comparison of British and American policy governing infertility, Gladys White7 argued quite explicitly that the British system is a good guide for U.S. policy. She based her argument on a review of U.K. policy and in particular on a visit to the HFEA in London. Whites pro-HFEA position has become a staple argument in bioethics and legal scholarship. In this paper, we compare the two systems in greater detail, taking issue with the conclusions drawn by White and others. In Part II, we compare the role of the HFEA in the United Kingdom to the authority and limitations of several agencies and organizations in the United States. These are the Centers for Disease Control and Prevention (CDC), the American Society for Reproductive Medicine (ASRM), the Society for Assisted Reproductive Technology (SART), the American College of Obstetrics and Gynecology (ACOG), the Food and Drug Administration (FDA), and the Department of Health and Human Services (DHHS). Relying heavily on our review of the existing policies and on Dr. McGees comparative analysis of the HFEA and American institutions-conducted for the Commonwealth Foundation during 2000-2002(8)-we address the roles of these organizations and the HFEA in legislation, data collection, licensing, and regulation of fertility clinics and embryo research. Our comparison reveals the patchwork and essentially unenforceable nature of the American regulatory system, and the centralized, effectual authority of the HFEA. In Part III, we examine the effect that trans-Atlantic discourse has had on recent regulatory policy shifts and important ethical debates in reproductive medicine. Specifically, we analyze the feasibility of importing a U.K.-style system to the U.S. and the strengths and roots of the current U.S. system. We explore specific regulations regarding reproduction technology including embryonic stem cell research, in vitro fertilization (IVF), and novel infertility treatments (ooplasmic transplantation and egg freezing) involving the use of human cells, tissues, semen, and oocytes. …

States and Moral Pluralism

Bioethicists are often interested mostly in national standards and institutions, but state governments have historically overseen a wide range of bioethical issues and share responsibility with the federal government for still others. States ought to have an important role. By allowing for multiple outcomes, the American federal system allows a better fit between public opinion and public policies.

Selection against Disability: Abortion, ART, and Access

This essay re-examines the disability critique of prenatal and pre-implantation screening in light of evidence about the larger context in which fertility and reproductive healthcare is rendered in the U.S. It argues that efforts to identify acceptable criteria for trait-based selection or otherwise impose reasons-based limitations on reproductive choice should be avoided because such limitations tend to perpetuate the discrimination encountered by adults with disabilities seeking fertility and reproductive health services.

Putting Law in the Room

attenuation in the case of a self-aware child is not only that it goes against that child’s interests by preventing her from reaching her full stature. The wrongness of growth attenuation is that it involves a failure to love and embrace the child with the characteristics and capacities she has. The mistake lies in making a child pay the price of medically unnecessary surgical modification for continued inclusion in her family’s everyday life. These wrongs are no less wrong even if Ashley will never be aware of them. Most actions that we consider to be wrong are wrong whether or not the victim of the action is aware that it has occurred. In the case of People v. Minkowski, for example, a gynecologist was convicted of raping his patients after he had engaged in intercourse with them during vaginal exams without their consent, although they were not aware at the time that that was what he was doing. As Meir Dan-Cohen (1999) argues, it is coherent to state that they were raped—and therefore wronged—even before they realized that they had been raped. When Diekema and Fost argue that growth attenuation is morally acceptable only if it is performed on a child who will never know what was done, they are arguing, in effect, that the intervention was morally acceptable because Ashley’s presumed cognitive impairment makes her different from most people. We argue, in contrast, that it is unacceptable because Ashley is the same as most people. She is the same in deserving to be accepted by and respected by and loved by her family for who she is and what she will become, with no modification required.

Practical, State, and Federal Limits on the Scope of Compelled Disclosure of Health Records

In their target article, Rothstein and Talbott (2007) estimate that healthcare providers release as many as 25 million complete medical records a year to employers, insurers and other parties pursu...

Disability and Bioethics

Although disability rights activists and bioethicists share a common commitment to respect for individuals of all abilities, they often find themselves on different sides of issues involving the provision or removal of health care to persons with disabilities. This article considers the differing perspectives each group brings to such cases, comparing the medical model of disability to social and identity models favored by disability scholars. It also explores the history of treatment of people with disabilities in the health care system, and how awareness of this history and of differing perspectives about disability can change bioethical conversation.