David Wasserman

New fetal therapies offer important prospects for improving health. However, having to consider both the fetus and the pregnant woman makes the risk–benefit analysis of fetal therapy trials challenging. Regulatory guidance is limited, and proposed ethical frameworks are overly restrictive or permissive. We propose a new ethical framework for fetal therapy research. First, we argue that considering only biomedical benefits fails to capture all relevant interests. Thus, we endorse expanding the considered benefits to include evidence-based psychosocial effects of fetal therapies. Second, we reject the commonly proposed categorical risk and/or benefit thresholds for assessing fetal therapy research. Instead, we propose that the individual risks for the pregnant woman and the fetus should be justified by the benefits for them and the study’s social value. Studies that meet this overall proportionality criterion but have mildly unfavorable risk–benefit ratios for pregnant women and/or fetuses may be acceptable.

It is commonly thought that disability is a harm or “bad difference” because having a disability restricts valuable options in life. In his recent essay “Disability, Options and Well-Being,” Thomas Crawley offers a novel defense of this style of reasoning and argues that we and like-minded critics of this brand of argument are guilty of an inconsistency. Our aim in this article is to explain why our view avoids inconsistency, to challenge Crawley's positive defense of the Options Argument, and to suggest that this general line of reasoning employs a double standard.

Proposals for allocating scarce lifesaving resources in the face of the Covid-19 pandemic have aligned in some ways and conflicted in others. This paper attempts a kind of priority setting in addressing these conflicts. In the first part, we identify points on which we do not believe that reasonable people should differ—even if they do. These are (i) the inadequacy of traditional clinical ethics to address priority-setting in a pandemic; (ii) the relevance of saving lives; (iii) the flaws of first-come, first-served allocation; (iv) the relevance of post-episode survival; (v) the difference between age and other factors that affect life-expectancy; and (vi) the need to avoid quality-of-life judgments. In the second part, we lay out some positions on which reasonable people can and do differ. These include (i) conflicts between maximizing benefits and priority to the worst off; (ii) role-based priority; and (iii) whether patients’ existing lifesaving resources should be subject to redistribution.

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?

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.