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Published on: November 26, 2015
Nothing about us without us: Sharing results with communities that provide genomic data
Sarah LeBaron von Baeyer1, Rebecca M Crocker2, Rindra Rakotoarivony3
1Variant Bio, Seattle, WA, USA.
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.
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