Forum Meeting on POPIA
In South Africa (SA) the use of personal information for research is regulated by the National Health Act No 61 of 2003 and its 2012 regulations, the Department of Health Ethics in Health Research: Principles, Processes and Structures Guidelines and the Promotion of Access to Information Act (PAIA) No 2 of 2000. This changes with the coming into force of the Protection of Personal Information Act (POPIA) No 4 of 2013 on 1 July 2020 [ https://www.justice.gov.za/inforeg/docs/InfoRegSA-POPIA-act2013-004.pdf]. All public and private bodies that are processing personal information have until 1 July 2021 to ensure that they are compliant with the law.
To guide the application of POPIA to research, the Academy of Sciences of South Africa (ASSAf) considers it essential to develop a POPIA Code of Conduct for Research. This will ensure certainty, transparency and clarity in the use of personal information for research. ASSAf also considers that it is imperative that there is one Code to guide the use of personal information for research in all sectors (including health, social science, genomics, etc.).
ASSAf hosted a virtual forum meeting on 21st October 2020 during the Open Access Week, which was attended by over 290 participants. The aim of the meeting was to consider the development of a POPIA Code of Conduct for Research. It was proposed at this meeting that ASSAf facilitate the development of the Code by engaging a wide spectrum of stakeholders including researchers, ethicists and legally trained people to ensure inclusivity with multiple stakeholders prior to the submission of the Code to the Information Regulator for approval.
The meeting was facilitated by Prof Himla Soodyall, Executive Officer of ASSAf. The presenters included Dr Rachel Adams, Senior Research Specialist of the Impact Centre at the HSRC; Prof Michele Ramsay, Professor in the Division of Human Genetics at the National Health Laboratory Service and University of the Witwatersrand; Dr Harriet Etheredge, Ethics and Regulatory at Wits Donald Gordon Medical Centre; Dr Antonel Olckers, CEO of DNAbiotec; Prof Tobias Schonwetter, Associate Professor and the Director of the Intellectual Property Unit at the University of Cape Town’s Law Faculty; and Prof Collet Dandara, Professor of Human Genetics at the University of Cape Town.