Though antiretroviral therapy is the standard of care for people living with HIV, its treatment limitations, burdens, stigma and costs lead to continued interest in HIV cure research. Early-phase cure trials, particularly those that include analytic treatment interruption, involve uncertain and potentially high risk, with minimal chance of clinical benefit. Some question whether such trials should be offered, given the risk/benefit imbalance, and whether those who choose to participate are acting rationally. We address these questions through a longitudinal decision-making study (...) nested in a Thai acute HIV research cohort. In-depth interviews revealed central themes about decisions to join. Participants felt they possessed an important identity as members of the acute cohort, viewing their bodies as uniquely suited to both testing and potentially benefiting from HIV cure approaches. While acknowledging risks of ATI, most perceived they were given an opportunity to interrupt treatment, to test their own bodies and increase normalcy in a safe, highly monitored circumstance. They were motivated by potential benefits to themselves, the investigators and larger acute cohort, and others with HIV. They believed their own trial experiences and being able to give back to the community were sufficient to offset participation risks. These decisions were driven by the specific circumstances experienced by our participants. Judging risk/benefit ratios without appreciating these lived experiences can lead to false determinations of irrational decision- making. While this does not minimise vital oversight considerations about risk reduction and protection from harm, it argues for inclusion of a more participant-centered approach. (shrink)

I whole-heartedly endorse Ismaili M'hmandi’s efforts to move away from the narrowest of liberal justificatory grounds for public health policy. I worry, however, that the liberal perfectioni...

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

Bowman-Smart et al. (2023) argue for a framework to examine the ethical issues associated with genetic screening for non-medical traits in the context of noninvasive prenatal testing (NIPT). Such s...

Abstract25.6 Million people in the United States have Limited English Proficiency (LEP), defined as insufficient ability to read, write, or understand English. We will (1) Delineate the merits of approaching language as a social determinant of health, (2) highlight pertinent public health values and guidelines which are most relevant to the plight of populations with LEP and (3) Use the COVID-19 pandemic as an example of how a breakdown in public health ethics values created harm for populations and patients with (...) LEP. We define a framework to tease out public health responsibilities given some populations’ limited proficiency in a society’s predominant language. The American Public Health Association (APHA) public health ethics core values serve as a framework to interrogate current practices. We use the COVID-19 case to illustrate gaps between health policy and healthcare disparities experienced by populations with LEP. (shrink)

Bioethicists in healthcare institutions have the skills and insights and can and must facilitate and promote measures that address deeply ingrained structural issues that exacerbate health inequity...

A dominant cultural narrative within Costa Rica describes Costa Ricans not only as different from their Central American neighbours, but it also exalts them as better: specifically, as more white, peaceful, egalitarian and democratic. This notion of Costa Rican exceptionalism played a key role in the creation of their health care system, which is based on the four core principles of equity, universality, solidarity and obligation. While the political justification and design of the current health care system does, in part, (...) realize this ideal, we argue that the narrative of Costa Rican exceptionalism prevents the full actualization of these principles by marginalizing and excluding disadvantaged groups, especially indigenous and black citizens and the substantial Nicaraguan minority. We offer three suggestions to mitigate the self-undermining effects of the dominant national narrative: 1) encouragement and development of counternarratives; 2) support of an emerging field of Costa Rican bioethics; and 3) decoupling health and national successes. (shrink)

MacKay’s Public Health Virtue Ethics offers a distinctive approach to public health ethics, with social structures at the forefront. MacKay’s helpful overview of the recent literature considers three distinct referents for ascribing virtues in public health ethics: (i) individuals, such as public health practitioners, (ii) social structures, such as public health institutions and policies and (iii) the communities affected by public health policy. While MacKay is interested in virtuous structures, I am interested in the structure of virtue as a precursor (...) to this approach. In this commentary, I seek to unpack the structure of virtue itself, to delineate what various accounts of public health virtues offer, including MacKay’s new account. For such clarity, I turn to David Pears’ neo-Aristotelian essay on moral courage, in which he distinguishes external goals, internal goals and countergoals. Additional virtue vocabulary advances discussion of how the moral psychology of virtue traditions can be best adapted to public health professions, policy and practice. (shrink)

This paper explores differences in national responses to foodborne disease outbreaks, addressing both the sources of policy divergence and their implications for public health and coordinated emergency response. It presents findings from a comparative study of two multi-state E. coli outbreaks, one in the United States and one in Germany, demonstrating important differences in how risk managers understood and responded to each nation’s first major outbreak associated with fresh produce. Drawing on a qualitative analysis of 36 semi-structured interviews with key (...) stakeholders and hundreds of archival documents, this paper traces how social constructions of the E. coli risk interacted with organizational dynamics among state and industry actors to produce divergent policy outcomes: the U.S. outbreak was understood primarily as an agricultural problem that led to an industry-led agricultural solution, whereas the German outbreak was understood as a human disease problem that did not result in a substantial policy response once the acute health crisis passed. The paper concludes by discussing how these policy processes generate partial solutions to foodborne contamination that expose modern societies to systemic vulnerabilities. (shrink)