ELSIcon2022 Panel: Engagement with Historically Marginalized Communities: Methods, Positionality and ELSI in Precision Medicine Research

ELSIcon2022 • Panel Session 12 • June 2, 2022

Kyle B. Brothers, Nanibaa' A. Garrison, Maya Sabatello, Amy Lemke

The practice of community engaged research is grounded in ethical, practical, social, and racial justice rationales. Yet community engagement (CE) in genomic and precision medicine research raises a myriad of ELSI issues when historically marginalized communities are involved, such as the definition of and risk for group harm, data and benefit sharing, and in-group and out-group biases. Little attention has been given to the positionality of stakeholders in community engaged research - some of whom may have an intersectional hat as both clinical, social, and health scientists as well as community members - and to the challenges, responsibilities, and potential impacts of positionality on study implementation and outcomes. A panel of researchers of diverse professional background and positionality within the communities with which they work (Vietnamese, Indigenous, and disability communities) will explore the promise and lessons learnt from CE in genomic and precision medicine research. An interactive discussion with the audience will follow.