Scope
The Population Descriptors, Social and Ethical Implications (POPSEI) Working Group will identify, investigate, and respond to ethical, social, and related considerations that may arise over the course of the PRIMED Consortium. The development and use of polygenic risk scores (PRS) constitutes an exciting new scientific area but is fraught with numerous challenges related to equity application across diverse ancestral groups and suitability for clinical use, among others. The WG will identify specific challenges and opportunities to address, provide structured discussions around each issue, and propose specific follow-up plans to include, as appropriate, follow-up discussion with other WGs, feedback to the Steering Committee, and outreach via publications and commentaries to the broad scientific community. The WG will additionally serve as a resource to PRIMED investigators, Study Sites, and WGs on social and ethical implications as well as population descriptor considerations in PRIMED projects and manuscripts. The WG will also provide guidance and support to PRIMED investigators, Study Sites, and Working Groups on the selection, use, and discussion of population descriptors in PRIMED projects and manuscripts.
Proposed Priorities:
- Identify, investigate, and respond to ethical and social considerations in PRIMED
- Articulate PRS use cases and identify ethical considerations, especially relating to implementation of methods using genetic ancestry or population descriptors
- Consider and assess use of genetic ancestry and other population descriptors (such as self-reported race and ethnicity) in PRS in papers & projects, including through regular interactions with the Methods WG (e.g. occasional joint WG meetings and collaborative proposals)
- Forum for Consortium members to raise and discuss issues arising in PRIMED analyses relating to ethics and/or population descriptors