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).
PROJECT NARRATIVE A number of US employers are offering their employees confidential workplace genomic testing (wGT), a service that could inform employees of their genetic risk for certain treatable diseases but may also raise concerns about genetic privacy and workplace discrimination.
PROJECT NARRATIVE Consumer protections are of rising importance to the sustainability of personal genomics and mobile health industries and realization of precision health, yet the extent of consumer protections available from the Federal Trade Commission (the primary federal agency in the United States responsible for ensuring online privacy and data security beyond medical settings, for the prevention of unfair and deceptive trade practices of companies that might not be governed by HIPAA, and for promoting innovation) are poorly characterized and have received surprisingly little ELSI re
PROJECT NARRATIVE At least 15% of children with cancer have an underlying genetic cause of their cancer, requiring significant counseling regarding therapy modifications, cancer surveillance, and lifestyle changes for both the patient and their family. There is a shortage of qualified genetic counselors available to meet with these families, especially in the stressful setting of cancer diagnosis.