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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...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2020
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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. |
format | Online Article Text |
id | pubmed-8249083 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
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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