Safeguarding the future of genomic research in South Africa: Broad consent and the protection of Personal Information Act No. 4 of 2013

Staunton, Ciara, Adams, R., Botes, M., Dove, E. S., Horn, L., Labuschaigne, M., Loots, G., Mahomed, S., Makuba, J., Olckers, A., Pepper, M. S., Pope, A., Ramsay, M., Loideain, N. N. and De Vries, J. (2019) Safeguarding the future of genomic research in South Africa: Broad consent and the protection of Personal Information Act No. 4 of 2013. South African Medical Journal, 109 (7). pp. 468-470. ISSN 0256-9574

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Abstract

Genomic research has been identified in South Africa (SA) as important in developing a strong bio-economy that has the potential to improve human health, drive job creation and offer potential solutions to the disease burden harboured by low- and middle-income countries. Central to the success of genomic research is the wide sharing of biological samples and data, but the true value of data can only be unlocked if there are laws and policies in place that foster the legal and ethical sharing of genomic data. The introduction and entry into force of SA's Protection of Personal Information Act (POPIA) No. 4 of 2013 is to be welcomed, but the wording of POPIA as it pertains to consent for the processing of personal information for research purposes has sparked a debate about the legal status of broad consent. We argue that a purposive interpretation of the legislation would permit broad consent for the processing of personal information for research. Although there are ongoing debates surrounding the ethical use of broad consent in Africa, the objective of this article is not to engage with the ethics of broad consent itself, but rather to focus on the legal status of broad consent for genomic data sharing under POPIA.

Item Type: Article
Additional Information: Suid-Afrikaanse tydskrif vir geneeskunde E-ISSN: 2078-5135
Research Areas: A. > School of Law
Item ID: 27023
Notes on copyright: Copyright remains in the Author’s name. The work is licensed under a Creative Commons Attribution - Noncommercial Works License. Published in: South African Medical Journal 2019;109(7):468-470. DOI:10.7196/SAMJ.2019.v109i7.14148
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SWORD Depositor: Jisc Publications Router
Depositing User: Jisc Publications Router
Date Deposited: 17 Jul 2019 08:29
Last Modified: 19 Jul 2019 18:01
URI: https://eprints.mdx.ac.uk/id/eprint/27023

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