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

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dc.date.accessioned 2019-08-19T12:17:29Z
dc.date.available 2019-08-19T12:17:29Z
dc.date.issued 2019-07-03 en
dc.identifier.uri http://hdl.handle.net/20.500.11910/14146
dc.description.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. en
dc.format.medium Print en
dc.subject RESEARCH en
dc.subject PROTECTION OF PUBLIC INFORMATION ACT (POPIA) en
dc.subject ECONOMIC GROWTH en
dc.subject JOB CREATION en
dc.title Safeguarding the future of genomic research in South Africa: broad consent and the Protection of Personal Information Act No. 4 of 2013 en
dc.type Journal Article en
dc.description.version Y en
dc.ProjectNumber N/A en
dc.Volume 109(7) en
dc.BudgetYear 2019/20 en
dc.ResearchGroup Research Use and Impact Assessment en
dc.SourceTitle South African Medical Journal en
dc.ArchiveNumber 10923 en
dc.PageNumber 141-148 en
dc.outputnumber 10015 en
dc.bibliographictitle Staunton, C., Adams, R., Botes, M., Dove, E. & Loots, G. (2019) Safeguarding the future of genomic research in South Africa: broad consent and the Protection of Personal Information Act No. 4 of 2013 . <i>South African Medical Journal</i>. 109(7):141-148. en
dc.publicationyear 2019 en
dc.contributor.author1 Staunton, C. en
dc.contributor.author2 Adams, R. en
dc.contributor.author3 Botes, M. en
dc.contributor.author4 Dove, E. en
dc.contributor.author5 Loots, G. en


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