Engaging with communities in biomedical and genomic research is increasingly seen as critical for navigating ethical considerations, and a necessary part of the scientific process. Why? Meaningful engagement can foster trust and transparency by involving communities in decision-making processes, communicating research goals and findings clearly, and addressing concerns or misconceptions. Engaging with communities can maximize impact and relevance by helping researchers identify research priorities, understand real-world challenges, and develop interventions that address the needs of the populations they aim to serve. This ensures that genomics research has a meaningful impact on health outcomes and contributes to improving public health.

An explicit goal of the National Human Genome Research Institute (NHGRI) is the support of health equity, yet it has been shown that genomic data lacks sufficient diversity (across many dimensions) for clinical genomics to be able to contribute to the mitigation of health inequities. Actively involving communities in genomics research can increase participation rates and support recruitment of diverse and marginalized groups, leading to more representative datasets. This can improve the generalizability and applicability of research findings and reduce biases in genomic databases.                          

But the next question is: How? Community-engaged research has been described as existing on a continuum based on levels of “equity indicators” such as power, control, ownership, and responsibility. At the more engaged end of the spectrum, communities can: initiate research agendas or priorities to which researchers respond, share equally with researchers in decision-making and ownership (as in community based participatory research), or lead research, either with or without scientific researcher support. Some, like Selker and Wilkins in the reading list below, are reconceptualizing community-engaged research as a form of team science.

Community engagement in research varies widely around the globe and still faces unresolved questions about fundamental issues, such as: What is a community? What counts as expertise, how should it be shared, and what should reciprocal education look like? Is more or equal involvement of partners always better? What is clear is that one size does not fit all. This collection serves as a starting point for understanding the many forms of community engagement currently used in research and their impacts on research and communities. It also offers reflections and recommendations from communities engaging in research.