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

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 acknow...

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Detalles Bibliográficos
Autores principales: Matimba, Alice, Ali, Stuart, Littler, Katherine, Madden, Ebony, Marshall, Patricia, McCurdy, Sheryl, Nembaware, Victoria, Rodriguez, Laura, Seeley, Janet, Tindana, Paulina, Yakubu, Aminu, de Vries, Jantina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8753388/
https://www.ncbi.nlm.nih.gov/pubmed/35017180
http://dx.doi.org/10.1136/bmjgh-2021-007184
Descripción
Sumario: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.