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‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa

In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub‐region to facilitate future indigenous genomi...

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Detalles Bibliográficos
Autores principales: Tindana, Paulina, Molyneux, Sassy, Bull, Susan, Parker, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6624131/
https://www.ncbi.nlm.nih.gov/pubmed/29063669
http://dx.doi.org/10.1111/dewb.12178
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author Tindana, Paulina
Molyneux, Sassy
Bull, Susan
Parker, Michael
author_facet Tindana, Paulina
Molyneux, Sassy
Bull, Susan
Parker, Michael
author_sort Tindana, Paulina
collection PubMed
description In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub‐region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision‐making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework.
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spelling pubmed-66241312019-07-11 ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa Tindana, Paulina Molyneux, Sassy Bull, Susan Parker, Michael Dev World Bioeth Articles In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub‐region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision‐making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework. John Wiley and Sons Inc. 2017-10-23 2019-03 /pmc/articles/PMC6624131/ /pubmed/29063669 http://dx.doi.org/10.1111/dewb.12178 Text en © 2019 The Authors. Developing World Bioethics. Published by John Wiley & Sons Ltd This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Articles
Tindana, Paulina
Molyneux, Sassy
Bull, Susan
Parker, Michael
‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa
title ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa
title_full ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa
title_fullStr ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa
title_full_unstemmed ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa
title_short ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub‐Saharan Africa
title_sort ‘it is an entrustment’: broad consent for genomic research and biobanks in sub‐saharan africa
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6624131/
https://www.ncbi.nlm.nih.gov/pubmed/29063669
http://dx.doi.org/10.1111/dewb.12178
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