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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
  • Wellcome Genome Campus
  • Akili Labs (Pty) Ltd
  • World Health Organization
  • National Human Genome Research Institute (NHGRI)
  • Case Western Reserve University
  • University of Texas Health Science Center at Houston
  • University of Cape Town
  • London School of Hygiene & Tropical Medicine
  • University of Ghana
  • Center for Bioethics and Research
  • Federal Ministry of Health
  • 54gene

Research output: Contribution to journalArticlepeer-review

22 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
Externally publishedYes

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

  1. SDG 3 - Good Health and Well-being
    SDG 3 Good Health and Well-being

Keywords

  • health policy
  • health services research

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