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

Sarah LeBaron von Baeyer; Rebecca M Crocker; Rindra Rakotoarivony; Jean Freddy Ranaivoarisoa; Germain Jules Spiral; Tristan Pascart; Vehia Wheeler; Tehani Mairai; Noomi O Gregersen; Stephane E Castel; Laura M Yerges-Armstrong; Keolu Fox; Kaja A Wasik

doi:10.1016/j.cell.2024.08.023

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

Cell. 2024 Oct 3;187(20):5483-5489. doi: 10.1016/j.cell.2024.08.023. Epub 2024 Sep 19.

Affiliations

¹ Variant Bio, Seattle, WA, USA. Electronic address: [email protected].
² University of Arizona, Tucson, AZ, USA.
³ University of Antananarivo, Antananarivo, Madagascar.
⁴ Lille Catholic University, Lille, France.
⁵ Australian National University, Canberra, ACT, Australia; Sustainable Oceania Solutions, Afareaitu, Mo'orea, French Polynesia.
⁶ Variant Bio, Seattle, WA, USA.
⁷ Faroe Genome Project, Tórshavn, Faroe Islands; University of the Faroe Islands, Tórshavn, Faroe Islands.
⁸ Indigenous Futures Institute, University of California, San Diego, La Jolla, CA, USA; J. Craig Venter Research Institute, La Jolla, CA, USA. Electronic address: [email protected].
⁹ Variant Bio, Seattle, WA, USA; J. Craig Venter Research Institute, La Jolla, CA, USA. Electronic address: [email protected].

PMID: 39303717
DOI: 10.1016/j.cell.2024.08.023

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.

MeSH terms

Biomedical Research
Genomics*
Humans
Information Dissemination*
United States