ELSIcon2022 • Panel • June 3, 2022
Subhashini Chandrasekharan, Laura Beskow, Rosario Isasi, Stephen Sodeke
ELSIcon2022 • Pre-recorded Panel
The Polygenic Risk Methods in Diverse Populations (PRIMED) Consortium (comprised of NIH program staff, affiliate members, investigators at 7 study sites, and a Coordinating Center) is funded by the National Institutes of Health to develop and evaluate methods improve the predictive capacity of polygenic risk scores for populations of diverse ancestry. ELSI activities in PRIMED are expected to explore the implications of integrating heterogeneous datasets and generating PRS data which may differentially impact individuals of diverse ancestry.
This survey asks participants to supply demographic information (including educational level, household income, and race), rate their familiarity with precision medicine terms, indicate their attitudes to precision medicine, identify sources of medical information and potential barriers to participation in research, and complete a measure of trust in research and researchers. The survey is available in Table 1 and in the supporting information of the linked publication.
Project Narrative This proposal seeks to investigate the ethical, social, and policy implications of a new kind of genetic information currently available to the public: polygenic scores for educational attainment (EA-PGS).