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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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C Staunton, R Adams, M Botes, E S Dove, L Horn, M Labuschaigne, G Loots, S Mahomed, J Makuba, A Olckers, M S Pepper, A Pope, M Ramsay, N N Loideain, J de Vries

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.


Authors' affiliations

C Staunton, School of Law, Middlesex University, UK

R Adams, Human Sciences Research Council, Pretoria, South Africa; and Information Law and Policy Centre, Institute of Advanced Legal Studies, University of London, UK

M Botes, Biolawgic (Pty) Ltd, Johannesburg, South Africa

E S Dove, School of Law, University of Edinburgh, Scotland

L Horn, Office of Research Integrity, University of Cape Town, South Africa

M Labuschaigne, Department of Jurisprudence, School of Law, University of South Africa, Pretoria, South Africa

G Loots, Department of Science and Technology, Pretoria, South Africa

S Mahomed, Department of Jurisprudence, School of Law, University of South Africa, Pretoria, South Africa

J Makuba, African Academy of Sciences, Nairobi, Kenya

A Olckers, DNAbiotec (Pty) Ltd, Pretoria, South Africa

M S Pepper, Institute for Cellular and Molecular Medicine, Department of Immunology, and SAMRC Extramural Unit for Stem Cell Research and Therapy, Faculty of Health Sciences, University of Pretoria, South Africa

A Pope, Department of Private Law, Faculty of Law, University of Cape Town, South Africa

M Ramsay, Sydney Brenner Institute for Molecular Bioscience, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa

N N Loideain, Information Law and Policy Centre, Institute of Advanced Legal Studies, University of London, UK

J de Vries, Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa

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Keywords

Protection of Personal Information Act; Data sharing; Data protection; Broad consent; Genomics

Cite this article

South African Medical Journal 2019;109(7):468-470. DOI:10.7196/SAMJ.2019.v109i7.14148

Article History

Date submitted: 2019-06-28
Date published: 2019-06-28

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