(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.

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...

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)

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 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)

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)

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)

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)

Attending to racism and US bioethics raises the question of whether and how racism in bioethics has been the subject of bioethical scrutiny. Bioethics has certainly brought its analytical tools to bear on racist aspects of clinical care and biomedical research. But has bioethics studied racism in bioethics as its subject? A close examination of relevant reports, articles, and books in the US bioethics literature published in the early days of the field, pre-2000, shows mixed findings. In the 1970s, racism (...) as a bioethical concern was variously nonexistent, vaguely implied, and powerfully examined and condemned. In the late 1980s/early to mid-1990s, racism was more frequently described and critiqued, often in the context of discussions about African American perspectives of biomedical ethics and inequities in health care. Understanding how racism in bioethics has been addressed as an ethical concern has consequences for the historical narratives told about the field, for antiracist bioethics work today, and for envisioning an antiracist future for bioethics. (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.

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)

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)

Recent calls to address racism in bioethics reflect a sense of urgency to mitigate the lethal effects of a lack of action. While the field was catalyzed largely in response to pivotal events deeply rooted in racism and other structures of oppression embedded in research and health care, it has failed to center racial justice in its scholarship, pedagogy, advocacy, and practice, and neglected to integrate anti-racism as a central consideration. Academic bioethics programs play a key role in determining the (...) field’s norms and practices, including methodologies, funding priorities, and professional networks that bear on equity, inclusion, and epistemic justice. This article describes recommendations from the Racial Equity, Diversity, and Inclusion (REDI) Task Force commissioned by the Association of Bioethics Program Directors to prioritize and strengthen anti-racist practices in bioethics programmatic endeavors and to evaluate and develop specific goals to advance REDI. (shrink)

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

Theories of perception have traditionally dismissed the sense of smell as a notoriously variable and highly subjective sense, mainly because it does not easily fit into accounts of perception based on visual experience. So far, philosophical questions about the objects of olfactory perception have started by considering the nature of olfactory experience. However, there is no philosophically neutral or agreed conception of olfactory experience: it all depends on what one thinks odors are. We examine the existing philosophical methodology for addressing (...) our sense of smell: on the one hand appeals to phenomenology that focus on the experiential dimensions of odor perception and on the other approaches that look at odor sources and their material dimensions. We show that neither strategy provides enough information to account for the human sense of smell and argue that the inclusion of the missing dimension of biology, with its concern for the function (or functions) of olfaction, provides the means to develop a satisfactory and empirically informed philosophy of smell. (shrink)

Although moral distress is now a well-recognized phenomenon among all of the healthcare professions, few evidence-based strategies have been published to address it. In morally distressing situations, the “presenting problem” may be a particular patient situation, but most often signals a deeper unit- or system-centered issue. This article describes one institution’s ongoing effort to address moral distress in its providers. We discuss the development and evaluation of the Moral Distress Consultation Service, an interprofessional, unit/system-oriented approach to addressing and ameliorating moral (...) distress. (shrink)

I argue that a gendered division of labor is often the result of choices by women that count as fully voluntary because they are an expression of preferences and commitments that reflect women's understanding of their own good. Since liberalism has a commitment to respecting fully voluntary choices, it has a commitment to respecting these gendered choices. I suggest that justified political action may require that we fail to respect some people's considered choices.

Stress in health care is affected by moral factors. When people are prevented from doing ‘good’ they may feel that they have not done what they ought to or that they have erred, thus giving rise to a troubled conscience. Empirical studies show that health care personnel sometimes refer to conscience when talking about being in ethically difficult everyday care situations. This study aimed to construct and validate the Stress of Conscience Questionnaire (SCQ), a nine-item instrument for assessing stressful situations (...) and the degree to which they trouble the conscience. The items were based on situations previously documented as causing negative stress for health care workers. Content and face validity were established by expert panels and pilot studies that selected relevant items and modified or excluded ambiguous ones. A convenience sample of 444 health care personnel indicated that the SCQ had acceptable validity and internal consistency (Cronbach’s alpha exceeded 0.83 for the overall scale). Explorative factor analysis identified and labelled two factors: ‘internal demands’ and ‘external demands and restrictions’. The findings suggest that the SCQ is a concise and practical instrument for use in various health care contexts. (shrink)

The essence of religion was once widely thought to be a unique form of experience that could not be explained in neurological, psychological, or sociological terms. In recent decades scholars have questioned the privileging of the idea of religious experience in the study of religion, an approach that effectively isolated the study of religion from the social and natural sciences. Religious Experience Reconsidered lays out a framework for research into religious phenomena that reclaims experience as a central concept while bridging (...) the divide between religious studies and the sciences. Ann Taves shifts the focus from "religious experience," conceived as a fixed and stable thing, to an examination of the processes by which people attribute meaning to their experiences. She proposes a new approach that unites the study of religion with fields as diverse as neuroscience, anthropology, sociology, and psychology to better understand how these processes are incorporated into the broader cultural formations we think of as religious or spiritual. Taves addresses a series of key questions: how can we set up studies without obscuring contestations over meaning and value? What is the relationship between experience and consciousness? How can research into consciousness help us access and interpret the experiences of others? Why do people individually or collectively explain their experiences in religious terms? How can we set up studies that allow us to compare experiences across times and cultures? Religious Experience Reconsidered demonstrates how methods from the sciences can be combined with those from the humanities to advance a naturalistic understanding of the experiences that people deem religious. (shrink)

AI has numerous applications and in various fields, including the military domain. The increase in the degree of autonomy in some decision-making systems leads to discussions on the possible future use of lethal autonomous weapons systems (LAWS). A central issue in these discussions is the assignment of moral responsibility for some AI-based outcomes. Several authors claim that the high autonomous capability of such systems leads to a so-called “responsibility gap.” In recent years, there has been a surge in philosophical literature (...) around the concept of responsibility gaps and different solutions have been devised to close or bridge these gaps. In order to move forward in the research around LAWS and the problem of responsibility, it is important to increase our understanding of the different perspectives and discussions in this debate. This paper attempts to do so by disentangling the various arguments and providing a critical overview. After giving a brief outline of the state of the technology of LAWS, I will review the debates over responsibility gaps using three differentiators: those who believe in the existence of responsibility gaps versus those who do not, those who hold that responsibility gaps constitute a new moral problem versus those who argue they do not, and those who claim that solutions can be successful as opposed to those who believe that it is an unsolvable problem. (shrink)

In our time of increasing reliance on digital media the history of the book has a special role to play in studying the codex form and the persistence of old media alongside the growth of new ones. As a contribution to recent work on the continued use of manuscript in the handpress era, I focus on some examples of manuscripts copied from printed books in the Rylands Library and discuss the motivations for making them. Some of these manuscripts were luxury (...) items signalling wealth and prestige, others were made for practical reasons – to own a copy of a book that was hard to buy, or a copy that could be customized in the process of copying. The act of copying itself was also considered to have devotional and/or pedagogical value. (shrink)