David Wasserman

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics.

Noninvasive, prenatal whole genome sequencing may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions. To avoid these difficulties, we propose an unrestricted testing policy, under which prospective parents could obtain information on any variant of known significance after a careful informed consent process that uses an interactive decision aid to deliver a mandatory presentation on the purposes, techniques, and limitations of genomic testing, as well as optional resources for reflection and consultation. This process would encourage thoughtful, informed deliberation...

Adrienne Asch inspired, challenged, and provoked a generation of bioethicists and philosophers who were discovering the subject of disability. For Adrienne, disability was a complex phenomenon that raised universal issues of embodiment, justice, well‐being, and identity. She insisted that bioethicists and philosophers who invoked disability in discussions about these issues first learn something about it, for which her own work provided critical insights. She argued eloquently that those who relied on unsupported assumptions about disability, even in the most arcane debates, reinforced harmful stereotypes and impoverished their own thinking. At the same time, she urged that the claims of disability scholars concerning discrimination, fairness, and kindred issues be made with philosophical clarity. She was fearless with the smug and insular in both fields, but generous with those, like me, who were merely naive.

Noninvasive, prenatal whole genome sequencing may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions. To avoid these difficulties, we propose an unrestricted testing policy, under which prospective parents could obtain information on any variant of known significance after a careful informed consent process that uses an interactive decision aid to deliver a mandatory presentation on the purposes, techniques, and limitations of genomic testing, as well as optional resources for reflection and consultation. This process would encourage thoughtful, informed deliberation by prospective parents before deciding whether or how to use NIPW.

abstract   In this paper, we examine issues raised by the possibility of regulating emotions through pharmacological means. We argue that emotions induced through these means can be authentic phenomenologically, and that the manner of inducing them need not make them any less our own than emotions arising 'naturally'. We recognize that in taking drugs to induce emotions, one may lose opportunities for self-knowledge; act narcissistically; or treat oneself as a mere means. But we propose that there are circumstances in which none of these concerns arise. Finally, we consider how the possibility of drug-regulation might affect duties to feel emotions.

Ingmar Persson and Julian Savulescu1 warn of our destruction by the cognitively enhanced beings we create. Now, in a fascinating paper, Nicholas Agar2 warns of an even more disturbing prospect: cognitively enhanced beings may be entitled to sacrifice us for their own ends. These post-humans would likely conclude that they had higher moral status than we mere human beings, and we would have good reason to defer to their vastly superior moral knowledge. We would lack even the consolation of moral complaint.I will question both these claims: that we would have good reason to accept the conclusion of cognitively enhanced beings that they had superior moral status, and that they would be likely to reach such a conclusion . I will also question whether, if they were to have higher moral status, it would be wrong to create them, because it would be wrong to create beings with such costly needs.Agar argues that moral truths, including those about moral status, are like mathematical truths in eventually yielding to expert reasoning. This belief in moral enlightenment is extreme even for a moral realist. Michael Smith,3 whom Agar cites, merely adduces the gradual consensus that has emerged about issues that were once the subject of seemingly intractable disagreement: slavery, workers’ and women's rights and democracy. One may agree with Smith about slow, halting, moral progress, …

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.