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Enabling the use of health data for research: Developing a POPIA code of conduct for research in South Africa

C Staunton, R Adams, M Botes, J de Vries, M Labuschaigne, G Loots, S Mahomed, N N Loideain, A Olckers, M S Pepper, A Pope, M Ramsay

Abstract


Globally, there has been a move toward ‘open science’ that includes the sharing of health data for research. The importance of data sharing for research is generally acknowledged, but this must only be done with legal and ethical procedures and protections in place. The use and sharing of health data for research in South Africa has changed with the coming into force of the Protection of Personal Information Act (POPIA). POPIA should ensure greater transparency and accountability in the use of personal information. POPIA, however, adopts a principle-based approach to the regulation of personal information, and there is a lack of clarity and uncertainty in the application of some of these principles to the use of health data for research. POPIA provides for sector-specific responses through the development of codes of conduct. In this article, we discuss the need for a code of conduct for health research, and an approach that could be adopted in its development.


Authors' affiliations

C Staunton, Department of Law and Politics, School of Law, Middlesex University, London, UK; Institute for Biomedicine, Eurac Research, Bolanzo, Italy; Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa

R Adams, Human Sciences Research Council, Cape Town, South Africa

M Botes, Department of Health Law and Bioethics, College of Law and Management Studies, University of KwaZulu-Natal, South Africa

J de Vries, Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa

M Labuschaigne, Department of Jurisprudence, School of Law, University of South Africa, Pretoria, South Africa

G Loots, Department of Science and Innovation, South Africa

S Mahomed, Department of Jurisprudence, School of Law, University of South Africa, Pretoria, South Africa

N N Loideain, Information Law and Policy Centre, Institute of Advanced Legal Studies, University of London, UK; Faculty of Humanities, University of Johannesburg, South Africa

A Olckers, DNAbiotec (Pty) Ltd, Pretoria, South Africa

M S Pepper, Department of Immunology and Institute for Cellular and Molecular Medicine, Faculty of Health Sciences, University of Pretoria, South Africa

A Pope, Department of Private Law, Faculty of Law, University of Cape Town, South Africa

M Ramsay, Sydney Brenner Institute for Molecular Bioscience, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa

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Cite this article

South African Journal of Bioethics and Law 2021;14(1):33. DOI:10.7196/SAJBL.2021.v14i1.00740

Article History

Date submitted: 2021-04-19
Date published: 2021-04-19

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