David Wasserman

Eva Feder Kittay's Learning from My Daughter: The Value and Care of Disabled Minds is poised to make a major contribution to the disability literature and is likely to spark controversy among disability scholars. The book's central contribution is the articulation of an ethics of care for meeting the “genuine needs” and “legitimate wants” of people with disabilities or chronic illnesses. We applaud Kittay, who is the mother of a woman with cerebral palsy who has multiple physical and intellectual impairments, for sharing her story in such an eloquent, accessible, and personal manner. The question remains, however, as to whether Kittay's normative theory of care captures the ethical obligations that should exist between the carer and the cared‐for. In demanding that the cared‐for include the carer as a participant in all their interactions with others, Kittay conceptualizes what paid caregiving relationships should look like in a way we find misguided.

Disability and enhancement are often treated as opposing concepts. To become disabled in some respect is to move away from those who are enhanced in that same respect; to become enhanced is to move away from the corresponding state of disability. This chapter examines how best to understand the concepts of disability and enhancement in this symmetrical way. After considering various candidates, two types of accounts are identified as the most promising: welfarist accounts and typical-functioning accounts. The authors ultimately defend a complex typical-functioning account as the best way to achieve a symmetrical understanding of disability and enhancement.

This comment argues for increased tolerance of privacy risks in the Internet activity of adults with intellectual disabilities. Excessive caution about such risks denies those individuals not only the great benefits of Internet use but also the difficult but valuable experiences of loss, disappointment, and hurt associated with those risks. A level of risk-aversion appropriate for small children will be disrespectful for adults with intellectual disabilities. To the extent that additional safeguards are justified, they are better achieved through individualized security and privacy settings than through caregiver oversight.

In coming decades, fetal medicine may become a routine part of reproductive care. The measures pregnant women now take to protect fetal health are largely generic, like restricting their diets and using supplements. Relatively few interventions are based on specific conditions revealed by ultrasound or genetic testing. A recent finding, though, may herald a dramatic rise in “personalized” fetal medicine: certain drugs already approved by the Food and Drug Administration can apparently boost neural growth in fetuses with Down syndrome, improving cognitive functioning in the future child. Many more condition‐specific findings are likely in the near future. But as commentators have frequently observed about prenatal testing, technologies that appear to increase reproductive options also complicate and constrain them.

One widely used method for allocating health care resources involves the use of cost-effectiveness analysis (CEA) to rank treatments in terms of quality-adjusted life-years (QALYs) gained. CEA has been criticized for discriminating against people with disabilities by valuing their lives less than those of non-disabled people. Avoiding discrimination seems to lead to the ’QALY trap’: we cannot value saving lives equally and still value raising quality of life. This paper reviews existing responses to the QALY trap and argues that all are problematic. Instead, we argue that adopting a moderate form of prioritarianism avoids the QALY trap and disability discrimination.

The moral limits on how, and how much, parents may attempt to shape their children depend on what the moral project of parenthood is all about. A great deal has been written in the past forty years on the moral functions of parents and families and the acquisition and character of parental duties and rights. There has also been a great deal of philosophical writing on the use of technologies to create, select, and modify children, with such seminal works as Warnock et al., and Robertson. The two literatures have overlapped...

Dominic Wilkinson, a neonatal physician and medical ethicist, has written a searching, moving, and philosophically sophisticated book about the ethics of life and death decision making in the neonatal intensive care unit. Although I will devote much of this review to criticism, I want to say at the outset that Death or Disability represents interdisciplinary work at its very best. Wilkinson’s exposition is both rich in detail and uncompromising in its ethical analysis. He spares the reader none of the clinical, psychological, and moral complexities and uncertainties of the decisions made daily in the neonatal intensive care unit.I especially recommend this book to moral philosophers and practical ethicists...

Jon Elster reports that in 1940, and again in 1970, the U.S. draft lottery was challenged for falling short of the legally mandated ‘random selection’. On both occasions, the physical mixing of the lots appeared to be incomplete, since the birth dates were clustered in a way that would have been extremely unlikely if the lots were fully mixed. There appears to have been no suspicion on either occasion that the deficiency in the mixing was intended, known, or believed to favor or disfavor any identifiable group. If the selection was non-random in the way charged, Elster asks, was it unfair?

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.