Nothing about us without us: Sharing results with communities that provide genomic data.

LeBaron von Baeyer, Sarah; Crocker, Rebecca M; Rakotoarivony, Rindra; Ranaivoarisoa, Jean Freddy; Spiral, Germain Jules; Pascart, Tristan; Wheeler, Vehia; Mairai, Tehani et al. · Cell · 2024

review · Level V

Where this comes from

Abstract

Sharing genetic and other study results with the communities who participate in research falls under benefit-sharing and capacity-building initiatives that underpin a more equitable biomedical research relationship. Yet, which results to return and how remain fundamental challenges that persist in the absence of practical guidance and institutional policies. Here, we discuss how the return of results can be implemented across different geographies, study designs, and project budgets.

Medical subject headings