POPIA Public Consultation Forum and Stakeholder Engagement with the Research Ethics Committees (RECs)
With a deadline of 1 July 2021 looming, the pressure is on for all public and private bodies that are processing personal information to ensure that they are compliant with the Protection of Personal Information Act (POPIA) No 4 of 2013. The Academy of Science of South Africa (ASSAf) is facilitating the process to develop a Code of Conduct for Research under the Act.
ASSAf hosted two stakeholder events which were attended by scientists and researchers from diverse disciplinary backgrounds. During these meetings, stakeholders were given an opportunity to share insights and provide comment on the development of the Code of Conduct.
The Public Consultation Forum was held on 3 May 2021 and was attended by 654 participants. At this forum, presentations were offered on the process of developing a Code of Conduct, as well as on thematic areas of interest, including consent, genomics research, information matching programmes and the use of social media data in research. The forum was facilitated by Prof Michele Ramsay, Professor of Human Genetics, Wits. The presenters included Dr Rachel Adams, Senior Research Specialist of the Impact Centre, Human Sciences Research Council (HSRC), Prof Jerome Singh, Honorary Research Fellow University of KwaZulu-Natal (UKZN), Prof Jantina de Vries, Professor in the Department of Medicine and Bioethics, University of Cape Town (UCT), Prof Alan Christoffels, Director of the South African National Bioinformatics Institute, University of the Western Cape (UWC), Dr Dominique Anderson, Senior Researcher at the South African National Bioinformatics Institute at UWC; and Dr Antonel Olckers, CEO of DNAbiotec.
The Stakeholder Engagement with members of the RECs was co-hosted with the National Health Research Ethics Council (NHREC) on 18 May 2021 and was attended by 280 participants. The meeting was aimed at taking a deeper dive into the impact of the POPIA Code of Conduct for Research on Ethics Committees. The Discussion document published on 3 May in the South African Journal of Science provided a background on the deliberations of the Committees and to be consulted for further information. The intention of the meeting was to better understand the concerns of REC members and what would be most useful to their work in understanding the risks related to personal information from research participants and assuring compliance with POPIA. The forum was facilitated by Prof Michele Ramsay and Prof Mamello Sekhoacha, Chair of the NHREC. The presenters included Dr Rachel Adams, HSRC and Dr Harriet Etheredge, Wits Donald Gordon Medical Centre.