Beyond the Individual: Community-Centric Approaches to Increase Diversity in Biomedical Research

Abstract

Community-centric approaches to engage underrepresented populations—including community engagement, community-level consent practices, and capacity development for research—are means to enhance diversity in biomedical research populations in a more ethical way. Low diversity is a known problem in biomedical research that presents challenges in translating the benefits of research to the global population. Through long-term partnerships built on trust and collaboration, communities who would otherwise avoid research may be more willing to participate. When communities are engaged in research as partners and research questions are motivated by community health priorities, research is more meaningful and research methods are more respectful. Conversely, a lack of consultation throughout the research process can further alienate the very communities that these efforts are designed to engage. A number of underserved populations—for example American Indian and Alaska Native peoples—may value the benefits of research to a community equally or more than individual benefits. A community's autonomy must be considered, particularly when that community is not adequately protected by traditional informed consent processes. Opportunities for capacity development to support collaborative partnerships between communities and researchers are required to support engagement and understanding of the research process. Changes to research processes and infrastructure that encourage a higher level of research oversight within the community should be supported. In this paper, we present approaches that may improve diversity and equitable access to research and the delivery of health innovations for people that have historically been left out of biomedical research.