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

SOURCE: South African Medical Journal
OUTPUT TYPE: Journal Article
PUBLICATION YEAR: 2019
TITLE AUTHOR(S): C.Staunton, R.Adams, M.Botes, E.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
KEYWORDS: ECONOMIC GROWTH, JOB CREATION, PROTECTION OF PUBLIC INFORMATION ACT (POPIA), RESEARCH
DEPARTMENT: Research Use and Impact Assessment (RIA), Research Use and Impact Assessment (PRESS), Research Use and Impact Assessment (CC)
Print: HSRC Library: shelf number 10923

If you would like to obtain a copy of this Research Output, please contact Hanlie Baudin at researchoutputs@hsrc.ac.za.

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.