Community Engagement in Genomic Research: Where We Have Been and Where We Should Go

Community engagement in science has a long history but is particularly important for genomics because of the legacy of eugenics and the importance of diversity and representation in population genetics. In this article, I describe the role of community engagement in the context of the evolving relationship between science and society. Specifically, modern genomics is occurring during a shift toward context-driven, interdisciplinary, and socially robust research that is driven less by traditional values of science and more by relational processes. I review different approaches to engagement, including community-based participatory research, research with patient advocacy organizations, and citizen science/DIY efforts. I then highlight the ethical justification for community engagement in genomic research, including the need to address the history of injustices in genetic science and lack of diversity of participants. Finally, I review some of the challenges of community engagement and where we can look for guidance on practices of knowledge co-production.