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Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective

This article draws on reflections about humanness, friendliness and partiality, in the writings of Afro-communitarians to develop principles for thinking critically about why benefit sharing, what may count as benefits within the context of human research in Africa and the limits of the obligation o...

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Autores principales: Ewuoso, Cornelius, Sudoi, Allan, Kamuya, Dorcas
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9597086/
https://www.ncbi.nlm.nih.gov/pubmed/36313420
http://dx.doi.org/10.3389/fgene.2022.1014120
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author Ewuoso, Cornelius
Sudoi, Allan
Kamuya, Dorcas
author_facet Ewuoso, Cornelius
Sudoi, Allan
Kamuya, Dorcas
author_sort Ewuoso, Cornelius
collection PubMed
description This article draws on reflections about humanness, friendliness and partiality, in the writings of Afro-communitarians to develop principles for thinking critically about why benefit sharing, what may count as benefits within the context of human research in Africa and the limits of the obligation of benefit sharing. Suppose the thinking about humanness, friendliness, and partiality in Afro-communitarianism were the foundation of human genetic research in Africa, then, individuals who have contributed to research or borne its burden would benefit from its rewards. This is even more important if participants have pressing needs that researchers and/or research institutions can help ease. A failure to aid sample contributors and data providers in need when researchers and research institutions can—as well as an indifference to the serious needs of contributors—are failures to exhibit friendliness in the relevant ways. Finally, though providing benefits to contributors can be an important way of showing humanity to them, nonetheless, this obligation is not absolute and may be limited by the stronger obligation of shared experience—to advance science. Studies are still required to inquire how well these norms will work in practice and inform regulatory and legal frameworks.
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spelling pubmed-95970862022-10-27 Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective Ewuoso, Cornelius Sudoi, Allan Kamuya, Dorcas Front Genet Genetics This article draws on reflections about humanness, friendliness and partiality, in the writings of Afro-communitarians to develop principles for thinking critically about why benefit sharing, what may count as benefits within the context of human research in Africa and the limits of the obligation of benefit sharing. Suppose the thinking about humanness, friendliness, and partiality in Afro-communitarianism were the foundation of human genetic research in Africa, then, individuals who have contributed to research or borne its burden would benefit from its rewards. This is even more important if participants have pressing needs that researchers and/or research institutions can help ease. A failure to aid sample contributors and data providers in need when researchers and research institutions can—as well as an indifference to the serious needs of contributors—are failures to exhibit friendliness in the relevant ways. Finally, though providing benefits to contributors can be an important way of showing humanity to them, nonetheless, this obligation is not absolute and may be limited by the stronger obligation of shared experience—to advance science. Studies are still required to inquire how well these norms will work in practice and inform regulatory and legal frameworks. Frontiers Media S.A. 2022-10-12 /pmc/articles/PMC9597086/ /pubmed/36313420 http://dx.doi.org/10.3389/fgene.2022.1014120 Text en Copyright © 2022 Ewuoso, Sudoi and Kamuya. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Genetics
Ewuoso, Cornelius
Sudoi, Allan
Kamuya, Dorcas
Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective
title Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective
title_full Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective
title_fullStr Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective
title_full_unstemmed Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective
title_short Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective
title_sort rethinking benefit sharing in collaborative human genetic research from an afrocommunitarian perspective
topic Genetics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9597086/
https://www.ncbi.nlm.nih.gov/pubmed/36313420
http://dx.doi.org/10.3389/fgene.2022.1014120
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