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Short report
Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities
  1. Baergen Schultz1,
  2. Francis E Agamah2,
  3. Cornelius Ewuoso3,
  4. Ebony B Madden4,
  5. Jennifer Troyer1,
  6. Michelle Skelton2,
  7. Erisa Mwaka5
  8. On behalf of H3Africa Ethics and Community Engagement Working Group
  1. 1 National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA
  2. 2 Computational Biology Division, Department of Integrative Biomedical Sciences, Institute of Infectious Disease and Molecular Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
  3. 3 Medicine, University of the Witwatersrand, Johannesburg, Gauteng, South Africa
  4. 4 Training, Diversity and Health Equity Office, Office of the Director, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA
  5. 5 College of Health Sciences, Makerere University, Kampala, Uganda
  1. Correspondence to Ms Baergen Schultz; schultzbaergen{at}gmail.com; Francis E Agamah; francisagamahh{at}gmail.com

Abstract

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.

  • Ethics
  • Informed Consent
  • Ethics- Research
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/jme-2022-108650

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    Footnotes

    • Contributors BS and FEA were involved in organising the webinar. BS provided the first draft. All authors contributed to drafting and revising the manuscript.

    • Funding This study was funded by National Institutes of Health (1U24HG009780, U01HG0009810)

    • Map disclaimer The depiction of boundaries on this map does not imply the expression of any opinion whatsoever on the part of BMJ (or any member of its group) concerning the legal status of any country, territory, jurisdiction or area or of its authorities. This map is provided without any warranty of any kind, either express or implied.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

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