Leonard M. Fleck

This chapter argues that sufficientarianism fails to provide us with a morally adequate perspective for addressing contemporary complex problems of health care justice, especially in connection with health care rationing or setting limits. Sufficientarians must answer the following questions: When is enough, enough? What must it be enough _for_?” and What criteria should be used to determine when someone has had sufficient access to needed health care? This chapter argues that sufficientarianism in its various versions does not have the theoretical or practical capacity to address adequately most problems of health care justice. The same will be true for the various versions of egalitarianism, utilitarianism, and prioritarianism in relation to the complex problems of health care justice (limit-setting) in the real world. Instead, all these theories will have to rely on fair processes of rational democratic deliberation that supplement a pluralist conception of health care justice.

Health systems need to set priorities fairly. This book makes the case that priority setting and rationing contribute significantly to the possibility of affordable and fair health care and that clinicians play an indispensable role in that process. The book depicts the results of a survey of European physicians about their experiences with rationing and other cost-containment strategies, and their perception of scarcity and fairness in their health care systems. Responding to and complementing these findings, commentators discuss why resource allocation and bedside rationing is necessary and justifiable. The book explores how bedside rationing relates to clinical judgments about medical necessity and medical indications, marginal benefits, weak evidence-based medicine, and off-label use. The book highlights how comparative studies of health care systems can advance more effective and fair bedside rationing through learning from one another.

A screening test for more than 50 cancers at earlier stages would strike many as a godsend. Such a test would promise, prima facie, to save 160,000 lives annually from a premature death from cancer, reduce the intensity of medical treatment, and reduce social costs. In brief, this is what is promised by the Galleri test. We will delineate those claims in greater detail and critically assess them from medical, economic, and ethical perspectives. We conclude, with many others, that this test lacks clinical validity and clinical utility. In addition, annual public funding of $100 billion for this test would be socially unaffordable; the opportunity costs would be unacceptable for both ethical and economic reasons. Further, the least well off with respect to cancer care would be made worse off if this test were publicly funded for everyone over the age of fifty.

I agree with Jecker et al that “the headline-grabbing nature of existential risk (X-risk) diverts attention away from immediate artificial intelligence (AI) threats…”1 Focusing on very long-term speculative risks associated with AI is both ethically distracting and ethically dangerous, especially in a healthcare context. More specifically, AI in healthcare is generating healthcare justice challenges that are real, imminent and pervasive. These are challenges generated by AI that deserve immediate ethical attention, more than any X-risk issues in the distant future. Almost 50 years ago, John Knowles edited a volume titled Doing Better and Feeling Worse: Health in the United States. We are ‘doing better’ because numerous advances in medical technologies are saving more lives and improving the quality of our lives. But we are ‘feeling worse’ because the additional costs are unsustainable, are threatening funding for other social goods and are increasing injustices regarding the allocation of those resources. This is precisely the situation we are faced with regarding AI in medicine today. Exploding healthcare costs have generated increasing pressure to control those costs, often with unjust consequences. AI is touted as a critical mechanism for controlling healthcare costs, often with little thought given to justice-relevant consequences. Consider, for example, …

Can Rawlsian public reason sufficiently justify public policies that regulate or restrain controversial medical and technological interventions in bioethics (and the broader social world), such as abortion, physician aid-in-dying, CRISPER-cas9 gene editing of embryos, surrogate mothers, pre-implantation genetic diagnosis of eight-cell embryos, and so on? The first part of this essay briefly explicates the central concepts that define Rawlsian political liberalism. The latter half of this essay then demonstrates how a commitment to Rawlsian public reason can ameliorate (not completely resolve) many of the policy disagreements related to bioethically controversial medical interventions today. The goal of public reason is to reduce the size of the disagreement by eliminating features of the disagreement that violate the norms of public reason. The norms of public reason are those norms that are politically necessary to preserve the liberal, pluralistic, democratic character of this society. What remains is reasonable disagreement to be addressed through normal democratic deliberative processes. Specific issues addressed from a public reason perspective include personal responsibility for excessive health costs, the utility of a metaphysical definition of death for organ transplantation, and the moral status of excess embryos generated through IVF and/or their use in medical research.

The Dobbs decision has precipitated renewed medical, political, and professional interest in the issue of abortion. Because this decision handed responsibility for regulation of abortion back to the states, and because the states are enacting or have enacted policies that tend to be very permissive or very restrictive, the result has been legal and professional confusion for physicians and their patients. Medical education cannot resolve either the legal or ethical issues regarding abortion. However, medical education must prepare future physicians for caring for patients seeking abortion-related services. Physicians must be prepared to interact appropriately (sensitively and with integrity) with patients or colleagues whose views on abortion differ significantly from their own. This essay describes our educational effort to achieve that objective. The motto that governed this exercise was “No Easy Answers.”

What exactly is a “wicked problem”? It is a social or economic problem that is so complex and so interconnected with other issues that it is extraordinarily difficult or impossible to resolve. This is because all proposed resolutions generate equally complex, equally wicked problems. In this essay, I argue that precision medicine, especially in the context of the U.S. healthcare system, generates numerous wicked problems related to distributive justice. Further, I argue that there are no easy solutions to these wicked problems. The need for trade-offs is inescapable. Rough justice is the best outcome we can hope for, and that outcome requires a commitment to processes of public reason that are fair and inclusive.

Bioethicists appearing in the media have been accused of "shooting from the hip" (Rachels, 1991). The criticism is sometimes justified. We identify some reasons our interactions with the press can have bad results and suggest remedies. In particular we describe a target (fostering better public dialogue), obstacles to hitting the target (such as intrinsic and accidental defects in our knowledge) and suggest some practical ways to surmont those obstacles (including seeking out ways to write or speak at length, rather than in sound bites). We make use of our own research into the way journalists quote bioethicists. We end by suggesting that the profession as a whole look into this question more fully.

John Rawls has held up as a model of public reason the U.S. Supreme Court. I argue that the Dobbs Court is justifiably criticized for failing to respect public reason. First, the entire opinion is governed by an originalist ideological logic almost entirely incongruent with public reason in a liberal, pluralistic, democratic society. Second, Alito’s emphasis on “ordered liberty” seems completely at odds with the “disordered liberty” regarding abortion already evident among the states. Third, describing the embryo/fetus from conception until birth as an “unborn human being” begs the question of the legal status of the embryo/fetus, as if an obiter dictum settled the matter. Fourth, Alito accuses the Roe court of failing to exercise judicial restraint, although Alito argued to overturn Roe in its entirety. In brief, the Dobbs opinion is an illiberal, disingenuous, ideological swamp that swallows up public reason and the reproductive rights of women.

In this paper, I argue for the following points. First, all of us have a presumptive moral obligation to be organ donors if we are in the relevant medical circumstances at the time of death. Second, family members should not have the right to interfere with the fulfillment of that obligation. Third, the ethical basis for that obligation is reciprocity. If we want a sufficient number of organs available for transplantation, then all must be willing donors. Fourth, that likelihood is diminished if individuals are entirely free to refuse to be organ donors but still would demand to be organ recipients. Fifth, although individuals would be ethically obligated to be organ donors, we still need to permit them to refuse to be organ donors. Sixth, to encourage individuals to stay within the organ donation system, we should have as a just and ethically justified policy denying individuals an organ transplant in the relevant medical circumstances if they have chosen to exit the organ donation system. Individuals would not be permitted to be organ recipients if they were unwilling to be organ donors. This is what it means to be part of what Rawls in Political liberalism (15-22) would refer to as a “fair system of social cooperation.” We refer to this as the “reciprocity requirement.”

Solidarity is a fundamental social value in many European countries, though its precise practical and theoretical meaning is disputed. In a health care context, I agree with European writers who take solidarity normatively to mean roughly equal access to effective health care for all. That is, solidarity includes a sense of justice. Given that, I will argue that precision medicine represents a potential weakening of solidarity, albeit not a unique weakening. Precision medicine includes 150 targeted cancer therapies (mostly for metastatic cancer), all of which are extraordinarily expensive. Our critical question: Must a commitment to solidarity as defined mean that all these targeted cancer therapies should be guaranteed to all within each country in the European Union, no matter the cost, no matter the degree of effectiveness? Such a commitment would imply that cancer was ethically special, rightfully commandeering unlimited resources. That in itself would undermine solidarity. I offer multiple examples of how current and future dissemination of these targeted cancer drugs threaten a commitment to solidarity. An alternative is to fund more cancer prevention efforts. However, that too proves a threat to solidarity. Solidarity, with or without a sense of justice, is too abstract a notion to address these challenges. Further, we need to accept that we can only hope to achieve “rough justice” and “supple solidarity.” The precise practical meaning of these notions needs to be worked out through a fair and inclusive process of rational democratic deliberation, which is the real and practical foundation of just solidarity.

Accelerated approval of aducanumab for mild Alzheimer's by the U.S. Food and Drug Administration on June 7, 2021, has generated substantial medical, scientific, and ethical controversy. That approval was contrary to the nearly unanimous judgment of the FDA's Advisory Committee that little reliable evidence existed of significant benefit, even though the drug did reduce β‐amyloid. Three major ethical problems were created by this approval: (1) Medicare resources would be unjustly squandered, given the drug's $56,000 annual price and the 3.1 million older potential American patients needing the drug; (2) physicians will feel ethically compelled to provide the drug to desperate, insistent patients, given FDA approval and in spite of side effects of brain bleeds and brain swelling; (3) and false hopes are generated for patients. A needed corrective by the federal government would reduce reimbursement to the bare cost of producing the drug (plus only a modest profit) until a phase IV trial has been successfully completed.