Rethinking Benefit and Responsibility in the Context of Diversity: Perspectives from the Front Lines of Precision Medicine Research.

INTRODUCTION: Federal agencies have instituted guidelines to prioritize the enrollment and retention of diverse participants in precision medicine research (PMR). Prior studies examining participation of minoritized communities have shown that potential benefits represent a key determinant. Human subject research guidance, however, conceptualizes potential benefits narrowly, emphasizing generalized advances in medical knowledge. Further, few studies have provided qualitative data that critically examine how the concept of "benefit" is interpreted or challenged in the context of research practice. This paper examines the experiences of PMR investigators and frontline research staff to understand how standard approaches to benefit are received, contested, and negotiated "on the ground." METHODS: Findings are drawn from a qualitative project conducted across five US-based, federally funded PMR studies. Data collection included 125 in-depth interviews with a purposive sample of investigators, research staff, community advisory board members, and NIH program officers associated with these PMR studies. RESULTS: Researchers report that the standard approach to benefit - which relies on the premise of altruism and the promise of incrementally advancing scientific knowledge - is frequently contested. Researchers experience moral distress over the unmet clinical, psychosocial, and material needs within the communities they are engaging. Many believe the broader research enterprise has a responsibility to better address these needs. CONCLUSION: Researchers frequently take issue with and sometimes negotiate what is owed to participants and to their communities in exchange for the data they provide. These experiences of moral distress and these improvisations warrant systematic redress, not by individual researchers but by the broader research ethics infrastructure.

Social inequities and contemporary struggles for collective health in Latin America.

As part of a planned series from Global Public Health aimed at exploring both the epistemological and political differences in diverse public health approaches across different geographic and cultural regions, this special issue assembles papers that consider the legacy of the Latin American Social Medicine and Collective Health (LASM-CH) movements, as well as additional examples of contemporary social action for collective health from the region. In this introduction, we review the historical roots of LASM-CH and the movement's primary contributions to research, activism and policy-making over the latter-half of the twentieth century. We also introduce the special issue's contents. Spanning 19 papers, the articles in this special issue offer critical insight into efforts to create more equitable, participatory health regimes in the context of significant social and political change that many of the countries in the region have experienced in recent decades. We argue that as global health worldwide has been pushed to adopt increasingly conservative agendas, recognition of and attention to the legacies of Latin America's epistemological innovations and social movement action in the domain of public health are especially warranted.

Rethinking health research capacity strengthening.

Health research capacity strengthening (HRCS) is a strategy implemented worldwide to improve the ability of developing countries to tackle the persistent and disproportionate burdens of disease they face. Drawing on a review of existing HRCS literature and our experiences over the course of an HRCS project in Vietnam, we summarise major challenges to the HRCS enterprise at the interpersonal, institutional and macro levels. While over the course of several decades of HRCS initiatives many of these challenges have been well documented, we highlight several considerations that remain underarticulated. We advance critical considerations of the HRCS enterprise by discussing (1) how the organisation of US public health funding shapes the ecology of knowledge production in low- and middle-income country contexts, (2) the barriers US researchers face to effectively collaborate in capacity strengthening for research-to-policy translation, and (3) the potential for unintentional negative consequences if HRCS efforts are not sufficiently reflexive about the limitations of dominant paradigms in public health research and intervention.