Karen Meagher

Despite considerable scientific progress and the evolution of regulatory pathways to ensure safety and efficacy, US healthcare continues to see increasing health disparities. This suggests that clinical translation in of itself cannot be the only measure of its own success, especially when the most marginalized patients, are neglected in the development and implementation of medical innovations. This raises the question of whether a system that is narrowly focused on technical achievement can meet the moral obligations of medicine and public health. We argue that traditional technocratic standards are failing to integrate normative considerations into biomedical translation. What is needed is a translational domain that moves beyond safety and efficacy toward anticipating how proposed technologies will be effective in society as it exists. We propose an additional metric of success: translational justice.

Epistemic injustice is a concept capturing the way people are treated as knowers. In healthcare, epistemic injustice involves evaluation of a series of underlying knowledge-based conditions at the core of patient interactions. This article describes a case study demonstrating different forms of epistemic injustice as it manifests for Hispanic and Spanish-speaking people in healthcare settings characterized by English language dominance. The analysis provided here differentiates epistemic injustice in terms of hermeneutical injustice, testimonial injustice (including testimonial smothering), epistemic oppression, and epistemic colonialism. This discussion is tailored to provide a resource for bioethicists and clinical teams at the bedside and to advance an increased voice for patients and families in U.S. healthcare. While potential avenues for pursuing and assuring epistemic justice in healthcare systems are beyond the scope of this examination, we focus on using epistemic injustice to name oppression and opportunities for resistance in the current healthcare environment. An overview of how patients can be treated unfairly as knowers is also situated within a broader national discourse about other forms of injustice and is imperative to redress U.S. health disparities.

Background Increasingly, researchers are leveraging social science survey data and genomic samples from millions of biobank participants to develop polygenic indices (PGIs) for social and behavioral traits.Methods This article utilizes horizon scanning methodology to track academic and lay literature regarding PGIs.Results We identified and coded 441 academic and 123 lay literature items, tracking the traits, sources of genetic and health data, and how each item discussed the harms, benefits, and limitations of sociogenomic PGIs.Conclusion This in-depth review highlights variation in the portrayal of PGI research across academic and lay literature. Beyond simply elucidating what is being studied, and in which populations, this research shows how results are communicated, which messages are shown to academic and/or public audiences, and potential disconnects between how sociogenomic researchers and the lay literature describe the values and implications of the research.

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.

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.

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 (ATI), 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.

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.