Conundrum of "community": An analysis of ethical guidelines for genetic research and community engagement

Strategies for community engagement for genomics research have been proposed, but questions remain concerning their usefulness and applicability. Conceptualizations of “community” are necessarily porous, its meanings contextual, dependent on who is making the determination, and for what purpose. What guidance exists for investigators involved with particular communities in genomics research? This presentation reports on results of analysis of 62 guidelines issued by professional genetic organizations, tribal research councils and aboriginal groups, international health organizations, and national governments. An instrument was developed for data collection on a broad range of issues, including if and how guidelines defined “community” or “population” and recommendations provided for engaging communities. Findings suggest striking differences in the guidelines regarding definitions of “community” and recommendations for community engagement. For example, the recommendation to consider community input about reporting research results was found in none of the genetics or international guidelines and only 3 of the national ones, but was present in every aboriginal/indigenous guideline. Few policies in any category effectively integrated insights about both genetic research and community consultation, for example, by considering sample storage issues in light of particular culturally specific beliefs about the body. As genomics research with human populations expands and guidelines evolve, genetic researchers will benefit from policies that incorporate both sets of concerns. At the same time, communities who are considering participation in genetic research need to be educated on the issues critical to researchers so they can make informed decisions.