How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community.

BACKGROUND: There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular practice in biomedical research. In this study, we empirically examine the normative question: should communities be engaged when setting priorities for biomedical research projects, and, if so, how and for what purpose? METHODS: We conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work. Interview data were thematically analysed. RESULTS: Our study shows that biomedical researchers and community engagement experts strongly support engagement in biomedical research priority-setting, except under certain circumstances where it may be harmful to communities. However, they gave two distinct responses on what ethical purpose it should serve-either empowerment or instrumental goals-and their perspectives on how it should achieve those goals also varied. Three engagement approaches were suggested: community-initiated, synergistic, and consultative. Pre-engagement essentials and barriers to meaningful engagement in biomedical research priority-setting are also reported. CONCLUSIONS: This study offers initial evidence that meaningful engagement in priority-setting should potentially be defined slightly differently for biomedical research relative to certain types of applied health research and that engagement practice in biomedical research should not be dominated by instrumental goals and approaches, as is presently the case.

What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders' perspectives.

INTRODUCTION: Despite growing consensus on the need for equitable data sharing, there has been very limited discussion about what this should entail in practice. As a matter of procedural fairness and epistemic justice, the perspectives of low-income and middle-income country (LMIC) stakeholders must inform concepts of equitable health research data sharing. This paper investigates published perspectives in relation to how equitable data sharing in global health research should be understood. METHODS: We undertook a scoping review (2015 onwards) of the literature on LMIC stakeholders' experiences and perspectives of data sharing in global health research and thematically analysed the 26 articles included in the review. RESULTS: We report LMIC stakeholders' published views on how current data sharing mandates may exacerbate inequities, what structural changes are required in order to create an environment conducive to equitable data sharing and what should comprise equitable data sharing in global health research. CONCLUSIONS: In light of our findings, we conclude that data sharing under existing mandates to share data (with minimal restrictions) risks perpetuating a neocolonial dynamic. To achieve equitable data sharing, adopting best practices in data sharing is necessary but insufficient. Structural inequalities in global health research must also be addressed. It is thus imperative that the structural changes needed to ensure equitable data sharing are incorporated into the broader dialogue on global health research.