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Publication: Safeguarding the future of genomic research in South Africa: Broad consent and the Protection of Personal Information Act No. 4 of 2013
Staunton, C Adams, R Botes, M Dove, E.S Horn, L Labuschaigne, M Loots, G Mahomed, S Makuba, J Olckers, A
Staunton, C
Adams, R
Botes, M
Dove, E.S
Horn, L
Labuschaigne, M
Loots, G
Mahomed, S
Makuba, J
Olckers, A
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.
Description
Date
2019-06-28
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Journal ISSN
Volume Title
Publisher
South African Medical Journal
Collections
Research Projects
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Journal Issue
Keywords
Protection of Personal Information Act,Data sharing,Data protection,Broad consent,Genomics
Citation
Staunton C, Adams R, Botes M, Dove ES, Horn L, Labuschaigne M, Loots G, Mahomed S, Makuba J, Olckers A, Pepper MS , Pope A, Ramsay M, Loideain NN, De Vries J. 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. 2019 Jul 28;109(7):468-470. doi: 10.7196/SAMJ.2019.v109i7.14148