Stakeholder perspectives on informed consent for the use of genomic data by commercial entities

Stakeholder perspectives on informed consent for the use of genomic data by commercial entities
Webinar Report
Baergen Schultz, Francis E Agamah, Cornelius Ewuoso, Ebony B Madden, Jennifer Troyer, Michelle Skelton, Erisa Mwaka
Journal of Medical Ethics, 20 March 2023
In July 2020, the H3Africa Ethics and Community Engagement (E&CE) Working Group organised a webinar with ethics committee members and biomedical researchers from various African institutions throughout the Continent to discuss the issue of whether and how biological samples for scientific research may be accessed by commercial entities when broad consents obtained for the samples are silent. 128 people including Research Ethics Committee members (10), H3Africa researchers (46) including members of the E&CE working group, biomedical researchers not associated with H3Africa (27), representatives from the National Institutes of Health (16) and 10 other participants attended the webinar and shared their views. Several major themes emerged during the webinar, with the topics of broad versus explicit informed consent, defining commercial use, legacy samples and benefit sharing prevailing in the discussion. This report describes the consensus concerns and recommendations raised during the meeting and will be informative for future research on ethical considerations for genomic research in the African research context.

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