A Culture of Understanding: Reflections and Suggestions from a Genomics Research Community Board.

Kaplan B, Caddle-Steele C, Chisholm G, Esmond WA, Ferryman K, Gertner M, Goytia C, Hauser D, Richardson LD, Robinson M, Horowitz CR.

Abstract

There has been limited community engagement in the burgeoning field of genomics research. In the wake of a new discovery of genetic variants that increase the risk of kidney failure and are almost unique to people of African ancestry, community and clinical leaders in Harlem, New York, formed a community board to inform the direction of related research. The board advised all aspects of a study to assess the impact of testing for these genetic variants at primary care sites that serve diverse populations, including explaining genetic risk to participants. By reflecting on the board's experiences, we found that community voices can have tangible impact on research that navigates the controversial intersection of race, ancestry, and genomics by heightening vigilance, fostering clear communication between researchers and the community, and encouraging researchers to cede some control. Our reflections and work provide a strong justification for longitudinal community partnerships in genomics research.