Community engagement offers numerous opportunities to strengthen research design and implementation. In this presentation, we will discuss how 3 biobank-affiliated community advisory boards (CABs) assisted with the design of our ELSI study that explores sociogenomic polygenic scores. This growing and controversial field of research utilizes genetic and social science data from large-scale biobanks to generate polygenic scores (PGS) for socially-mediated, non-medical outcomes, such as income and educational attainment. While some argue use of sociogenomic PGS will greatly enhance social-science research, others raise concerns about the uses of these scores beyond research. To date, PGS for dozens of social traits have been developed. For our ELSI study, we turned to CABs to help us select just 5 social traits to systematically investigate the potential benefits and harms of their uses in different contexts. CAB members included biobank donors (people whose data may be used to generate and test PGS) as well as people who might be affected by use of PGS outside research contexts. We will describe our process of facilitating card-sort activities to elicit CAB members’ values and their prioritization of traits for further investigation in our ELSI study. Finally, we will discuss how the 5 chosen traits (obesity, educational attainment, aggression, life satisfaction, and religiosity) served as the basis for our subsequent empirical study of the views of biobank donors and the general public on sociogenomic PGS. Our presentation provides attendees with a guide to adapting these methods for community-engaged ELSI research, including for values-elicitation and priority-setting.
Authors: Karen Meagher, Mayo Clinic; Sara Watson, Mayo Clinic; Anya Prince, University of Iowa; R Jean Cadigan, University of North Carolina - Chapel Hill; Lia Kaz, University of North Carolina - Chapel Hill; Shawneequa Callier, George Washington University
