Abstract

THALDAR, D  and  TOWNSEND, B. Exempting Health Research from the Consent Provisions of POPIA. PER [online]. 2021, vol.24, n.1, pp.1-31. ISSN 1727-3781.  http://dx.doi.org/10.17159/1727-3781/2021/v24i0a10420.

The Protection of Personal Information Act 4 of 2013 (hereafter POPIA) has the potential to disrupt health research in South Africa. While the legal status quo is that broad consent by research participants is acceptable, POPIA requires specific consent for any processing of research participants' health and genetic information. However, POPIA offers mechanisms such as an exemption from specified measures which can potentially be used to ameliorate its impact. It is proposed that the health research sector should seek to utilise these mechanisms - in particular, a sector-wide exemption of all health research projects from the requirement of specific consent by research participants, subject to the conditions that: (a) a health research project must be approved by a health research ethics committee, and that (b) either specific, broad or tiered consent must be obtained for a health research project. Importantly, it would be counter-productive to approach such an application for exemption from the perspective of inconvenience for health researchers. Instead, an application for exemption must be approached from a human rights platform, and must be supported by solid evidence. Such evidence should include the results of empirical studies of South African research participants' preferences.

Keywords : Code of conduct; consent; exemption; POPIA; privacy; Protection of Personal Information Act.

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