Guideline for feedback of individual genetic research findings for genomics research in Africa

Alice Matimba, Stuart Ali, Katherine Littler, Ebony Madden, Patricia Marshall, Sheryl McCurdy, Victoria Nembaware, Laura Rodriguez, Janet Seeley, Paulina Tindana, Aminu Yakubu, Jantina De Vries

Research output: Contribution to journalArticlepeer-review

15 Citations (Scopus)

Abstract

As human genomics research in Africa continues to generate large amounts of data, ethical issues arise regarding how actionable genetic information is shared with research participants. The Human Heredity and Health in Africa Consortium (H3Africa) Ethics and Community Engagement Working group acknowledged the need for such guidance, identified key issues and principles relevant to genomics research in Africa and developed a practical guideline for consideration of feeding back individual genetic results of health importance in African research projects. This included a decision flowchart, providing a logical framework to assist in decision-making and planning for human genomics research projects. Although presented in the context of the H3Africa Consortium, we believe the principles described, and the decision flowchart presented here is applicable more broadly in African genomics research.

Original languageEnglish
Article numbere007184
JournalBMJ Global Health
Volume7
Issue number1
DOIs
Publication statusPublished - 11 Jan 2022

Keywords

  • health policy
  • health services research

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