In a plenary presentation on structural racism at the 2019 American Society of Bioethics and Humanities Annual Meeting, invited speaker Mary T. Bassett asserted that there is no solidarity without...

Short overview of the From Small Beginnings Project and its relevance for resisting eugenics in contemporary society.

U.S. Food and Drug Administration policy prohibits blood donation from men who have had sex with men even one time since 1977. Growing moral criticism claims that this policy is discriminatory, a claim rejected by the FDA. An overview of U.S. blood donation, recent donor deferral policy, and the conventional ethical debate introduce the need for a different approach to analyzing discrimination claims. I draw on an institutional understanding of injustice to discern and describe five features of the MSM policy (...) and its FDA context that contribute to its discriminatory effect. I note significant similarities in the 1980s policy of deferring Haitians, suggesting an historical pattern of discrimination in FDA deferral policy. Finally, I point to changes needed to move toward a nondiscriminatory deferral policy. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S50-S56, March‐April 2022.

The factions debating health care reform in the United States have gravitated toward one of two positions: that just health care is an individual responsibility or that it must be regarded as a national concern. Both arguments overlook a third possibility: that justice in health care is multilayered and requires the participation of multiple and diverse communities. _Communities of Health Care Justice_ makes a powerful ethical argument for treating communities as critical moral actors that play key roles in defining and (...) upholding just health policy. Drawing together the key community dimensions of health care, and demonstrating their neglect in most prominent theories of health care justice, Charlene Galarneau postulates the ethical norms of community justice. In the process, she proposes that while the subnational communities of health care justice are defined by shared place, including those bound by culture, religion, gender, and race that together they define justice. As she constructs her innovative theorization of health care justice, Galarneau also reveals its firm grounding in the work of real-world health policy and community advocates. _Communities of Health Care Justice_ not only strives to imagine a new framework of just health care, but also to show how elements of this framework exist in current health policy, and to outline the systemic, conceptual, and structural changes required to put these justice norms into fuller practice. (shrink)

This response to Kariyawasam and Rai affirms their critique of the pathologization of trans youth but forecasts a foreseeable negative outcome of their proposed elimination of diagnosis as a prerequisite to gender-affirming care (GAC) — the risk of removing GAC entirely from the medical sphere and compromising the wellbeing of those transgender individuals for whom GAC is deeply affirming. We suggest an ethical framework of GAC that expands past a focus on autonomy to incorporate a principle of respect for persons (...) that affirms the dignity and diversity of trans youth — recognizing the need to facilitate both medical assistance and social change. (shrink)

We often speak of health care as a social good. What kind of good it is-and what of us in making it available to the members of society-depends on how society underst value of health care may be understood in many different ways within society.

The U.S. 2010 Patient Protection and Affordable Care Act exempts members of health care sharing ministries from the individual mandate to have minimum essential insurance coverage. Little is generally known about these religious organizations and even less critical attention has been brought to bear on them and their ACA exemption. Both deserve close scrutiny due to the exemption’s less than clear legislative justification, their potential influence on the ACA’s policy and ethical success, and their salience to current religious liberty debates (...) surrounding the expansion of religious exemptions from ACA responsibilities for both individuals and corporations. Analyzing documents of the United States’ three largest health care sharing ministries and related material, I examine these organizations and their ACA exemption with particular consideration of their ethical dimensions. Here a thick description of the nature and workings of health care sharing ministries precedes a similar account of the ACA exemption. From these empirical analyses, five ethical and policy concerns emerge: the charity versus insurance status of these ministries; the conflation of two ACA religious exemptions; the tension between the values of religious liberty and of justice; the potential undermining of ACA policy goals; and the questionable compliance of health care sharing ministries with ACA exemption requirements. An accurate and informed understanding of HCSMs is required for policymakers and others to justify the ACA exemption of health care sharing ministry members. A sufficient justification would address at least the five ethical and policy concerns raised here. (shrink)

U.S. Food and Drug Administration policy prohibits blood donation from men who have had sex with men even one time since 1977. Growing moral criticism claims that this policy is discriminatory, a claim rejected by the FDA. An overview of U.S. blood donation, recent donor deferral policy, and the conventional ethical debate introduce the need for a different approach to analyzing discrimination claims. I draw on an institutional understanding of injustice to discern and describe five features of the MSM policy (...) and its FDA context that contribute to its discriminatory effect. I note significant similarities in the 1980s policy of deferring Haitians, suggesting an historical pattern of discrimination in FDA deferral policy. Finally, I point to changes needed to move toward a nondiscriminatory deferral policy. (shrink)

Given the enduring inequities in US health and health care, it is no surprise that particular communities are bearing the disproportionate brunt of the Covid‐19 pandemic and our responses to it. Many ethical aspects of the pandemic involve diverse communities bound by race, ethnicity, disability, income, residence, age, and more. How does bioethics engage these communities in theory and in practice? Only faintly, despite Covid‐19's relentless reminder that communities matter morally. This article sketches initial directions for developing a community‐inclusive bioethics, (...) one that understands communities as critical moral participants in the work of bioethics as well as in health and health care. (shrink)

The report from the Presidential Commission for the Study of Bioethical Issues is clear that the public health services research conducted in Guatemala mid‐century was wrong, but its focus on individual responsibilities is inadequate for the structural and institutional factors at the root of that research. Ethically Impossible”: STD Research in Guatemala from 1946 to 1948, released in September 2011 by the Presidential Commission for the Study of Bioethical Issues, 1 responds to President Obama's request for a “thorough fact‐finding investigation” (...) into research carried out by the U.S. Public Health Service in Guatemala from 1946 to 1948. “Ethically Impossible” offers a detailed narrative of what happened in Guatemala and a self‐described “unvarnished ethical analysis.” I argue, however, that being “ever vigilant” to prevent exploitation, as well as learning as a society from this past and honoring the memory of Guatemalan victims, requires a more complex ethical analysis than the commission offers in this report. Specifically, we need to identify the structural injustices that innervated the social relations and the institutions fundamental to the moral landscape of this 1940s research, and we need to expand our understandings of moral responsibility accordingly. The report posits three “longstanding and widely accepted moral principles” as the framework for evaluating this research: (1) to treat persons fairly and with respect, (2) not to harm (or risk harming) persons unless the risk is reasonable and the benefit proportional, and (3) not to treat persons as means to others’ ends. As critically important as the three principles are to research ethics writ large, they alone are unfitting tools for addressing the kind of structural and institutional moral factors that are so important in these PHS studies. (shrink)

Health justice seeks, both conceptually and in practice, to strengthen community engagement and empowerment as an integral means of addressing health disparities. In this essay, we explore the nature of communities and their roles in health care/public health. We propose that an ethical principle of respect for communities is a requisite part of health justice. It is this respect for communities that ethically grounds health justice’s calls for greater community engagement and empowerment. Conceptions of health justice, we claim, will gain (...) ethical power and coherence as this principle is more clearly recognized and further developed. (shrink)

(2013). Review of Anne-Maree Farrell, The Politics of Blood: Ethics, Innovation and the Regulation of Risk. The American Journal of Bioethics: Vol. 13, No. 4, pp. 54-56. doi: 10.1080/15265161.2013.768869.