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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


    Staunton, C, Adams, R, Botes, M, Dove, Edward, 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
    Keywords: Safeguarding; future; genomic research; South Africa; Broad consent; Protection; Personal Information; Act No. 4 of 2013;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19915
    Identification Number: 10.7196/SAMJ.2019.v109i7.14148
    Depositing User: Edward Dove
    Date Deposited: 27 May 2025 15:39
    Journal or Publication Title: South African Medical Journal
    Publisher: South African Medical Association
    Refereed: Yes
    Related URLs:
    URI: https://mural.maynoothuniversity.ie/id/eprint/19915
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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