Open science and privacy

The Protection of Personal Information Act 4 of 2013 (POPIA) entered into force in 2020, and the grace period for compliance has almost run out. From 1 July 2021 everyone in South Africa must be compliant with the privacy protections afforded by POPIA. What is the impact of POPIA on human genetics research? How can POPIA’s mechanisms best be used to find a fair balance between protecting research participants and promoting open science? These and more questions are answered in my articles on the topic:

Research and the meaning of ‘public interest’ in POPIA. South African Journal of Science. 2022.

Why research institutions should indemnify researchers against POPIA civil liability. South African Journal of Science. 2022. (Co-authored with Dr Lee Swales and Dr Dusty-Lee Donnelly).

Exempting health research from the consent provisions of POPIAPotchefstroom Electronic Law Journal. 2021 (Co-author: Dr Bev Townsend).

Why POPIA does not apply to DNASouth African Journal of Science. 2021.

Protecting personal information in research: Is a code of conduct the solution? South African Journal of Science. 2021. (Co-author: Dr Bev Townsend).

Genomic research and privacy: A response to Staunton et al. South African Medical Journal. 2020. (Co-author: Dr Bev Townsend).

Navigating uncharted waters: biobanks and informational privacy in South AfricaSouth African Journal of Human Rights. 2019 (First author: Dr Bev Townsend).

Here is a useful flowchart to explain the application of POPIA in the context of health research.