Community engagement and ethical global health research

Abstract

Community engagement is increasingly recognized as a critical element of medical research, recommended by ethicists, required by research funders and advocated in ethics guidelines. The benefits of community engagement are often stressed in instrumental terms, particularly with regard to promoting recruitment and retention in studies. Less emphasis has been placed on the value of community engagement with regard to ethical good practice, with goals often implied rather than clearly articulated. This article outlines explicitly how community engagement can contribute to ethical global health research by complementing existing established requirements such as informed consent and independent ethics review. The overarching and interlinked areas are (1) respecting individuals, communities and stakeholders; (2) building trust and social relationships; (3) determining appropriate benefits; minimizing risks, burdens and exploitation; (4) supporting the consent process; (5) understanding vulnerabilities and researcher obligations; (6) gaining permissions, approvals and building legitimacy and (7) achieving recruitment and retention targets.

The values and principles underpinning community engagement approaches to tackling antimicrobial resistance (AMR)

“…There will also be periods within a CE for AMR intervention that information must be given to the community in a one-way process, whilst misinformation at community level must be corrected by the research team. This practice is essential if AMR is to be tackled in a given community, but can potentially inhibit the community learning for itself, a problem recognised across health-based applications of CE [ 14 ]. Secondly, AMR remains a One Health problem.…”

Standardized metrics can reveal region-specific opportunities in community engagement to aid recruitment in HIV prevention trials

“…This has been noted as a challenge for implementation of GPP in research conducted by Newman et al [ 4 ]. While our consultations with communities did enable us to conduct recruitment that was sensitive to avoiding stigmatizing populations deemed at increased risk for acquisition of HIV, we did not conduct further work to consider the influences of wealth disparities and power imbalances among these populations which could also vary geographically [ 4 , 22 ]. Future research efforts would benefit from the study of these influences, and how community engagement efforts might address any of the issues that arise from them.…”

Evaluation of the forum theatre approach for public engagement around antibiotic use in Myanmar

“…Although the number of public engagement activities on health and research has been growing in the past decades, literature on the evaluation and impact of these activities is limited [18].…”