Webinar report

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

Bibliographic Data

ID21513993
AuthorsBaergen Schultz (National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA), Baergen I Schultz (National Institutes of Health, corresponding author), Francis E Agamah (0000-0002-2980-1392, University of Cape Town, corresponding author), Cornelius Ewuoso (0000-0001-7219-5554, Medicine, University of the Witwatersrand, Johannesburg, Gauteng, South Africa), Ebony B Madden (Training, Diversity and Health Equity Office, Office of the Director, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA), Ebony Madden (0000-0003-4510-9563, National Institutes of Health), Jennifer L Troyer (National Institutes of Health), Jennifer Troyer (National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA), Michelle Skelton (0000-0002-1390-2340, University of Cape Town), Erisa Mwaka (0000-0003-1672-9608, Makerere University)
Year2024
Volume50
Issue1
Pages57-61
Publication date2024-01-01
Open AccessYes
TypeARTICLE
VenueJournal of Medical Ethics (JOURNAL)
Journal identifiersISSN: 0306-6800 • E-ISSN: 1473-4257
PublisherBMJ (PUBLISHER • GB)
DOI10.1136/jme-2022-108650
PMID36941048
OpenAlexW4327911996
LanguageEN
Citations received1
References cited17

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

Alternative medicine · Bioethics · Data sharing · Engineering ethics · Ethical issues · Informed consent · Library science · Medical education · Pathology · Political science · Public relations · Research ethics · Sociology · Stakeholder · Stakeholder engagement · Biomedical Ethics and Regulation · Computer Science · Engineering · Ethics in Clinical Research · Health Systems, Economic Evaluations, Quality of Life · Law · Medicine

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Open DOIOpen Access