Community Engagement in Gene Editing: Building Community Partnerships in Genetics Research

Abstract: Advances in human gene editing offer potential for novel approaches to addressing a variety of medical conditions, including applications in the prenatal stage. However, responsible innovation in this space should be predicated not only on safety and efficacy considerations but also on effective governance mechanisms supported by meaningful community engagement. Research governance models prioritizing ethics and values are increasingly needed. Central to these efforts is representative community engagement to foster trust, inclusivity, and alignment with social values.
This panel will explore strategies for building meaningful community engagement through active collaborative processes involving those who can affect or be affected by the implementation of gene editing technologies. Speakers will highlight the need to elevate two historically overlooked perspectives: patient/family and professional communities (scientists, clinicians, and policymakers).
First, a bioethics and policy expert will present data from a qualitative study (n=51) of professionals with experience in policymaking in areas related to gene editing applications. They will address interviewees' perspectives on values-based governance models and conceptualizations of responsible innovation. Second, a graduate student in Clinical and Translational Sciences will present recruitment data from individuals affected by genetic conditions and share insights from recruiting approaches and enrollment experiences. Third, an ELSI researcher will present a methods overview of how to adapt deliberative democracy approaches to integrate scientific, policy, and community perspectives and develop a values-based governance framework for guiding gene editing. Finally, a political sociologist will moderate, leading discussions on empirically grounded strategies for equitable innovation in genomic translation.

Keywords: Community Engagement, Community Partnerships, Community Perspectives