Exempting health research from the consent provisions of POPIA

Like a fox in a chicken coop, the South African Protection of Personal Information Act (POPIA) has caused consternation among some scientists, bioethicists, and biolawyers. Until recently, the issue of acceptable modes of informed consent seemed to have been settled on a position that either specific, broad, or tiered consent is acceptable in South Africa. By contrast, POPIA requires consent to be specific, and for such specific consent to be obtained for various actions that are part of the health research, such as storage and sharing of research information. This has raised concerns that health research in South Africa and with South African collaborators may be impeded. One concern, in particular, is about large biobanks of specimens and data that were build up in the past without specific consent – can these specimens and data still be used for new research projects, or would research participants who donated years ago need to be traced and ‘reconsented’?

Dr Beverley Townsend and I show that POPIA itself offers possible solutions to these problems. Moreover, we show that the possible solutions offered by POPIA can, for the most part, be embedded in South Africa’s well-established and comprehensive regulatory framework for health research. The perceived fox may actually be a guard dog. 

Read our article here.

You can also see our other research on POPIA here.