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Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty

This article revisits the debate on the regulation of human genomic research, with a focus on Africa. The article comprehensively examines the concept of genomic sovereignty, which was invoked mainly in the global South as a conceptual framework for state regulation of human genomic research. It dem...

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Detalles Bibliográficos
Autores principales: Kabata, Faith, Thaldar, Donrich
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10347388/
https://www.ncbi.nlm.nih.gov/pubmed/37456664
http://dx.doi.org/10.3389/fgene.2023.1208606
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author Kabata, Faith
Thaldar, Donrich
author_facet Kabata, Faith
Thaldar, Donrich
author_sort Kabata, Faith
collection PubMed
description This article revisits the debate on the regulation of human genomic research, with a focus on Africa. The article comprehensively examines the concept of genomic sovereignty, which was invoked mainly in the global South as a conceptual framework for state regulation of human genomic research. It demonstrates that genomic sovereignty has no utility value in human genomic research as it violates the rights of individuals and researchers. By analysing Mexico’s regulatory approach based on genomic sovereignty and a divergent regulatory approach, viz Finland’s human genomic research framework, we show that a human rights approach is more promising as it aligns with the state obligations under the right of everyone to participate in and benefit from scientific progress and its applications in international human rights law. We conclude by recommending that African states should anchor regulation of human genomic research on a human rights framework based on the right to science.
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spelling pubmed-103473882023-07-15 Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty Kabata, Faith Thaldar, Donrich Front Genet Genetics This article revisits the debate on the regulation of human genomic research, with a focus on Africa. The article comprehensively examines the concept of genomic sovereignty, which was invoked mainly in the global South as a conceptual framework for state regulation of human genomic research. It demonstrates that genomic sovereignty has no utility value in human genomic research as it violates the rights of individuals and researchers. By analysing Mexico’s regulatory approach based on genomic sovereignty and a divergent regulatory approach, viz Finland’s human genomic research framework, we show that a human rights approach is more promising as it aligns with the state obligations under the right of everyone to participate in and benefit from scientific progress and its applications in international human rights law. We conclude by recommending that African states should anchor regulation of human genomic research on a human rights framework based on the right to science. Frontiers Media S.A. 2023-06-30 /pmc/articles/PMC10347388/ /pubmed/37456664 http://dx.doi.org/10.3389/fgene.2023.1208606 Text en Copyright © 2023 Kabata and Thaldar. 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
Kabata, Faith
Thaldar, Donrich
Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty
title Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty
title_full Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty
title_fullStr Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty
title_full_unstemmed Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty
title_short Regulating human genomic research in Africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty
title_sort regulating human genomic research in africa: why a human rights approach is a more promising conceptual framework than genomic sovereignty
topic Genetics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10347388/
https://www.ncbi.nlm.nih.gov/pubmed/37456664
http://dx.doi.org/10.3389/fgene.2023.1208606
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