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Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia

The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study usi...

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Autores principales: Mweemba, Oliver, Musuku, John, Mayosi, Bongani M., Parker, Michael, Rutakumwa, Rwamahe, Seeley, Janet, Tindana, Paulina, De Vries, Jantina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Routledge 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734073/
https://www.ncbi.nlm.nih.gov/pubmed/33343192
http://dx.doi.org/10.1080/11287462.2019.1592868
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author Mweemba, Oliver
Musuku, John
Mayosi, Bongani M.
Parker, Michael
Rutakumwa, Rwamahe
Seeley, Janet
Tindana, Paulina
De Vries, Jantina
author_facet Mweemba, Oliver
Musuku, John
Mayosi, Bongani M.
Parker, Michael
Rutakumwa, Rwamahe
Seeley, Janet
Tindana, Paulina
De Vries, Jantina
author_sort Mweemba, Oliver
collection PubMed
description The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use.
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spelling pubmed-77340732020-12-18 Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia Mweemba, Oliver Musuku, John Mayosi, Bongani M. Parker, Michael Rutakumwa, Rwamahe Seeley, Janet Tindana, Paulina De Vries, Jantina Glob Bioeth Consent in genomics research in sub-Saharan Africa The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use. Routledge 2019-03-24 /pmc/articles/PMC7734073/ /pubmed/33343192 http://dx.doi.org/10.1080/11287462.2019.1592868 Text en © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Consent in genomics research in sub-Saharan Africa
Mweemba, Oliver
Musuku, John
Mayosi, Bongani M.
Parker, Michael
Rutakumwa, Rwamahe
Seeley, Janet
Tindana, Paulina
De Vries, Jantina
Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
title Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
title_full Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
title_fullStr Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
title_full_unstemmed Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
title_short Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia
title_sort use of broad consent and related procedures in genomics research: perspectives from research participants in the genetics of rheumatic heart disease (rhdgen) study in a university teaching hospital in zambia
topic Consent in genomics research in sub-Saharan Africa
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734073/
https://www.ncbi.nlm.nih.gov/pubmed/33343192
http://dx.doi.org/10.1080/11287462.2019.1592868
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