Re-envisioning community genetics: community empowerment in preventive genomics

As genomic technologies rapidly develop, polygenic scores (PGS) are entering into a growing conversation on how to improve precision in public health and prevent chronic disease. While the integration of PGS into public health and clinical services raises potential benefits, it also introduces potential harms. In particular, there is a high level of uncertainty about how to incorporate PGS into clinical settings in a manner that is equitable, just, and aligned with the long-term goals of many healthcare systems to support person-centered and value-based care. This paper argues that any conversation about whether and how to design and implement PGS clinical services requires dynamic engagement with local communities, patients, and families. These parties often face the consequences, both positive and negative, of such uncertainties and should therefore drive clinical translation. As a collaborative effort between hospital stakeholders, community partners, and researchers, this paper describes a community-empowered co-design process for addressing uncertainty and making programmatic decisions about the implementation of PGS into clinical services. We provide a framework for others interested in designing clinical programs that are responsive to, and inclusive and respectful of, local communities.

Automated summary

As genomic technologies advance, the use of polygenic scores (PGS) in public health and clinical services is growing, leading to potential benefits and harms. Integrating PGS into healthcare systems requires engagement with local communities, patients, and families to address uncertainty and make informed decisions. This paper presents a community-driven co-design process for implementing PGS into clinical services, providing a framework for inclusive and respectful program design.