David Wasserman

How should we respond to individuals with disabilities? What does it mean to be disabled? Over fifty million Americans, from neonates to the fragile elderly, are disabled. Some people say they have the right to full social participation, while others repudiate such claims as delusive or dangerous. In this compelling book, three experts in ethics, medicine, and the law address pressing disability questions in bioethics and public policy. Anita Silvers, David Wasserman, and Mary B. Mahowald test important theories of justice by bringing them to bear on subjects of concern in a wide variety of disciplines dealing with disability. They do so in the light of recent advances in feminist, minority, and cultural studies, and of the groundbreaking Americans with Disabilities Act

The ability to sequence individual genomes is leading to the identification of an increasing number of genetic risk factors for serious diseases. Knowledge of these risk factors can often provide significant medical and psychological benefit, but also raises complex ethical and social issues. This paper focuses on one area of rapid progress: the identification of mutations causing long QT syndrome and other cardiac channel disorders, which can explain some previously unexplained deaths in infants (SIDS) and children and adults (SUDS) and prevent others from occurring. This genetic knowledge, discovered posthumously in many cases, has implications for clinical care for surviving family members who might carry the same mutations. The information obtained from genetic testing, in the context of personal and family history, can guide individually tailored interventions that reduce risk and save lives. At the same time, obtaining and disclosing genetic information raises difficult issues about confidentiality and decision making within families. We draw on the experience of the Montefiore-Einstein Center for Cardiogenetics, which has played a leading role in the genetic diagnosis and clinical management of cardiac channel diseases, to explore some of the challenging ethical questions arising in affected families with adolescent children. We focus on the related issues of (1) family confidentiality, privacy and disclosure and (2) adolescent decision making about genetic risk, and argue for the value of interdisciplinary dialogue with affected families in resolving these issues.

It might seem that racial profiling by doctors raised few of the same concerns as racial profiling by police, immigration, or airport security. This paper argues that the similarities are greater than first appear. The inappropriate use of racial generalizations by doctors may be as harmful and insulting as their use by law enforcement officials. Indeed, the former may be more problematic in compromising an ideal of individualized treatment that is more applicable to doctors than to police. Yet doctors, unlike police, should not attempt to ignore race altogether. Race and ethnicity are associated with the geography of disease, with social and cultural factors relevant to disease, and, to some extent, with genetic predispositions to disease. Moreover, greater attention to the distinctive health conditions of certain racial and ethnic groups is necessary to make up for past neglect. But it will be a tricky business to steer a middle course between a naïve, reckless, or dogmatic color blindness and a stereotype-driven overreliance on race and ethnicity. In trying to steer such a course, the doctor can only hope for the day when a combination of more individualized genomic medicine and greater social equality will make it possible for her to pay less attention to race and ethnicity without detriment to her patients' health

It is gratifying that thoughtful philosophers and bioethicists like Mahowald and Nelson are continuing to address the objections to prenatal testing that have been made by disability scholars and advocates. But it is frustrating to see those objections presented in ways that reflect the doubts of those who reject them more than the intentions of those who make them, in ways that make those objections appear censorious toward pregnant women and prospective parents or naïve about nonverbal expression. We recognize that disability critics share the responsibility for these misunderstandings, that their objections to prenatal disability testing have not always been made as clearly or consistently as they might have been. We therefore welcome this opportunity for clarification and rebuttal. Briefly, we will argue against Mahowald that it is not apparent how prospective parents could have a duty to potential offspring requiring them to prevent the birth of any child expected to have a life worth living. And we will remind Nelson that our primary concern is with the perpetuation of stigma; that even if any reason for abortion can be framed in terms of a trait of the fetus to be aborted, only certain reasons for abortion are based on the rejection of future children because of stigmatized traits.