The Social Value Requirement in Research: From the Transactional to the Basic Structure Model of Stakeholder Obligations
Danielle M. Wenner

The Nuremberg Code and other research ethics guidelines stipulate that clinical research with human subjects is ethical only if it has the potential to produce knowledge that is socially valuable. But the ethical foundation for this requirement has come under criticism. Danielle Wenner contends that much of this discussion rests on conceiving of ethical research as a transaction where the subjects, investigators, and sponsors of a study ought to be able to fairly benefit from the research study. Wenner writes that this grounding is insufficient because it fails to consider those who are not involved in the research study but will be unable to opt out of its effects, such as individuals who are part of the health care systems shaped by clinical research. Wenner calls for a framework that considers the broader societal impacts of the research. Wenner is an assistant professor of philosophy and the associate director of the Center for Ethics & Policy at Carnegie Mellon University.

Other Voices: David B. Resnik raises practical questions about how oversight committees ought to define what constitutes “socially valuable knowledge” in implementing Wenner’s model, acknowledging the wide range of outcomes that could be regarded as socially valuable, including economic benefits to the few. Resnik is a bioethicist at the National Institute of Environmental Health Sciences.

Poverty: Not a Justification for Banning Physician-Assisted Death
Lindsey M. Freeman, Susannah L. Rose, and Stuart Youngner

Many critics of legalizing physician-assisted death fear it will further harm those who are already economically disadvantaged. But while this argument points to a serious problem about how economic considerations influence medical decisions, this apprehension is not borne out in the context of PAD, the authors write. In the United States, concerns about money influence medical decisions throughout the course of an illness, and at the end of life, they are much more likely to influence a decision about whether to pursue expensive and aggressive treatments than to influence a request for PAD, since hospice care is mostly covered by Medicaid, Medicare, and private insurance. And while being economically disadvantaged does not rob individuals of their ability to make autonomous decisions about whether to pursue PAD, it is critical to consider poverty as a legitimate factor in health care decision-making. Lindsey Freeman is a medical student at Case Western University School of Medicine and Stuart Youngner is a professor of bioethics and psychiatry in the Department of Bioethics at Case Western’s School of Medicine; Susannah L. Rose is a faculty member at the Cleveland Clinic and Cleveland Clinic’s Lerner College of Medicine at Case Western.

Medical Aid in Dying: Bioethics as Sideshow
Courtney S. Campbell

Twenty years ago, the passage of the Oregon Death with Dignity Act brought about vigorous debate about whether physician aid in dying is ethical. In 2018, an amendment to the law was proposed that would allow patients to issue an advance directive that would permit a representative to administer life-ending medications to them in the event that they lose decision-making capacity. The proposed amendment signals a shift from physician-assisted death to medical aid in dying, from self-administration of life-ending medication to administration of that medication by an appointed agent. In light of this proposed amendment, Courtney S. Campbell reflects on how supporting patient autonomy may not be the most important thing in patient care. Campbell is the Hundere professor of religion and culture at Oregon State University.

Also in this issue:

• Who Deserves Access to Care in Children’s Hospitals?
• A set of essays in celebration of the 200^th anniversary of Frankenstein, by Tod S. Chambers, Eric Trump, Rosemarie Garland-Thomson, and Jason Scott Robert
• Special Report: Brain Death at Fifty: Exploring Consensus, Controversy, and Contexts

Contact Susan Gilbert, director of communications
The Hastings Center
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