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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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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
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author 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
author_facet 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
author_sort Matimba, Alice
collection PubMed
description 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.
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spelling pubmed-87533882022-01-26 Guideline for feedback of individual genetic research findings for genomics research in Africa 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 BMJ Glob Health Practice 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. BMJ Publishing Group 2022-01-10 /pmc/articles/PMC8753388/ /pubmed/35017180 http://dx.doi.org/10.1136/bmjgh-2021-007184 Text en © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ. 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/.
spellingShingle Practice
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
Guideline for feedback of individual genetic research findings for genomics research in Africa
title Guideline for feedback of individual genetic research findings for genomics research in Africa
title_full Guideline for feedback of individual genetic research findings for genomics research in Africa
title_fullStr Guideline for feedback of individual genetic research findings for genomics research in Africa
title_full_unstemmed Guideline for feedback of individual genetic research findings for genomics research in Africa
title_short Guideline for feedback of individual genetic research findings for genomics research in Africa
title_sort guideline for feedback of individual genetic research findings for genomics research in africa
topic Practice
url 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
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