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The governance of genomic biobank research in Africa: reframing the regulatory tilt

Genomic biobank research has experienced exponential growth in recent years. It represents a real opportunity to remedy global health inequity that has seen limited investment in diseases affecting populations from low- and middle-income countries. Previous research in Africa was limited to so-calle...

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Autores principales: Staunton, Ciara, de Vries, Jantina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8249083/
https://www.ncbi.nlm.nih.gov/pubmed/34221433
http://dx.doi.org/10.1093/jlb/lsz018
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author Staunton, Ciara
de Vries, Jantina
author_facet Staunton, Ciara
de Vries, Jantina
author_sort Staunton, Ciara
collection PubMed
description Genomic biobank research has experienced exponential growth in recent years. It represents a real opportunity to remedy global health inequity that has seen limited investment in diseases affecting populations from low- and middle-income countries. Previous research in Africa was limited to so-called parachute research, whereby samples were taken from local populations for use in high-income countries with no local oversight or use of the sample. These exploitative practices must be guarded against, but the current regulation of genomic research in Africa adopts a precautionary approach that at times is restrictive in nature. We argue that the regulation and oversight of genomic biobank research should guard against exploitative research, but in a manner that promotes reciprocal benefit and not restrictive research practices. To achieve this, there must be a rebalancing of the regulatory tilt.
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spelling pubmed-82490832021-07-02 The governance of genomic biobank research in Africa: reframing the regulatory tilt Staunton, Ciara de Vries, Jantina J Law Biosci Essay Genomic biobank research has experienced exponential growth in recent years. It represents a real opportunity to remedy global health inequity that has seen limited investment in diseases affecting populations from low- and middle-income countries. Previous research in Africa was limited to so-called parachute research, whereby samples were taken from local populations for use in high-income countries with no local oversight or use of the sample. These exploitative practices must be guarded against, but the current regulation of genomic research in Africa adopts a precautionary approach that at times is restrictive in nature. We argue that the regulation and oversight of genomic biobank research should guard against exploitative research, but in a manner that promotes reciprocal benefit and not restrictive research practices. To achieve this, there must be a rebalancing of the regulatory tilt. Oxford University Press 2020-01-20 /pmc/articles/PMC8249083/ /pubmed/34221433 http://dx.doi.org/10.1093/jlb/lsz018 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution NonCommercial-NoDerivs licence (http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) ), which permits non-commercial reproduction and distribution of the work, in any medium, provided the original work is not altered or transformed in any way, and that the work properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Essay
Staunton, Ciara
de Vries, Jantina
The governance of genomic biobank research in Africa: reframing the regulatory tilt
title The governance of genomic biobank research in Africa: reframing the regulatory tilt
title_full The governance of genomic biobank research in Africa: reframing the regulatory tilt
title_fullStr The governance of genomic biobank research in Africa: reframing the regulatory tilt
title_full_unstemmed The governance of genomic biobank research in Africa: reframing the regulatory tilt
title_short The governance of genomic biobank research in Africa: reframing the regulatory tilt
title_sort governance of genomic biobank research in africa: reframing the regulatory tilt
topic Essay
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8249083/
https://www.ncbi.nlm.nih.gov/pubmed/34221433
http://dx.doi.org/10.1093/jlb/lsz018
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