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?

In this paper, we critically appraise institutions for people with disabilities, from residential facilities to outpatient clinics to social organizations. While recognizing that a just and inclusive society would reject virtually all segregated institutional arrangements, we argue that in contemporary American society, some people with disabilities may have needs that at this time can best be met by institutional arrangements. We propose ways of reforming institutions to make them less isolating, coercive, and stigmatizing, and to provide forms of social support the larger society denies many people with disabilities. Although these reforms far fall far short of abolition, they draw heavily on the work of disability scholars and advocates who call for the complete replacement of institutional arrangements with systems of supported living. The consideration of non-ideal-solutions is useful not only in reforming existing institutional arrangements, but in bringing disability scholarship and advocacy to bear on bioethics, which has paid little attention to institutions for people with disabilities. We intend this paper to redress the neglect within mainstream bioethics of the complex ethical problems posed by institutions.

This chapter deals with parental virtue or familial virtue and reproductive decision-making, particularly when the potential child has some impairment. There is a moral asymmetry between actions that raise or those that lower the chances of having a child with impairment. The former is regarded as wrong while the latter is considered morally correct. This chapter argues that such asymmetry is against the ideal of unconditional parental acceptance of their child, whatever his condition is. It proposes an alternative. Parents are justified to choose the kind of existence their child will have only if such an impairment is necessary for the child's existence. According to J. Scully, T. Shakespeare, and S. Banks, certain kinds of legitimate choices may be inappropriate for parents if these are against the nature of a parent-child relationship.

In this 2001 volume a group of leading philosophers address some of the basic conceptual, methodological and ethical issues raised by genetic research into criminal behavior. The essays explore the complexities of tracing any genetic influence on criminal, violent or antisocial behavior; the varieties of interpretations to which evidence of such influences is subject; and the relevance of such influences to the moral and legal appraisal of criminal conduct. The distinctive features of this collection are: first, that it advances public discussion while clarifying the debate about genetic research and criminal behavior; second, that it explains scientific controversies about behavioral genetics in lucid, non-technical terms; third, that it demonstrates how the possible findings on genetics and crime bear on fundamental issues of moral and criminal responsibility. The volume will be of particular value to philosophers concerned with applied ethics , behavioral geneticists, psychologists, legal theorists, and criminologists

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...