Cargando…
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...
Autores principales: | , , , , , , , , , , , |
---|---|
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 |
_version_ | 1784632085459238912 |
---|---|
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. |
format | Online Article Text |
id | pubmed-8753388 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT matimbaalice guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT alistuart guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT littlerkatherine guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT maddenebony guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT marshallpatricia guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT mccurdysheryl guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT nembawarevictoria guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT rodriguezlaura guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT seeleyjanet guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT tindanapaulina guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT yakubuaminu guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT devriesjantina guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica AT guidelineforfeedbackofindividualgeneticresearchfindingsforgenomicsresearchinafrica |