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

被引：1

作者：

Staunton, C. ^{[1
,2
,3
]}

Adams, R. ^{[4
]}

Botes, M. ^{[5
]}

de Vries, J. ^{[3
]}

Labuschaigne, M. ^{[6
]}

Loots, G. ^{[7
]}

Mahomed, S. ^{[6
]}

Loideain, N. N. ^{[8
,9
]}

Olckers, A. ^{[10
]}

Pepper, M. S. ^{[11
,12
]}

Pope, A. ^{[13
]}

Ramsay, M. ^{[14
]}

机构：

[1] Middlesex Univ, Sch Law, Dept Law & Polit, London, England

[2] Eurac Res, Inst Biomed, Bolanzo, Italy

[3] Univ Cape Town, Fac Hlth Sci, Dept Med, Cape Town, South Africa

[4] Human Sci Res Council, Cape Town, South Africa

[5] Univ KwaZulu Natal, Coll Law & Management Studies, Dept Hlth Law & Bioeth, Durban, South Africa

[6] Univ South Africa, Sch Law, Dept Jurisprudence, Pretoria, South Africa

[7] Dept Sci & Innovat, Pretoria, South Africa

[8] Univ London, Informat Law & Policy Ctr, Inst Adv Legal Studies, London, England

[9] Univ Johannesburg, Fac Humanities, Johannesburg, South Africa

[10] DNAbiotec Pty Ltd, Pretoria, South Africa

[11] Univ Pretoria, Fac Hlth Sci, Dept Immunol, Pretoria, South Africa

[12] Univ Pretoria, Fac Hlth Sci, Inst Cellular & Mol Med, Johannesburg, South Africa

[13] Univ Cape Town, Fac Law, Dept Private Law, Cape Town, South Africa

[14] Univ Witwatersrand, Fac Hlth Sci, Sydney Brenner Inst Mol Biosci, Johannesburg, South Africa

来源：

SOUTH AFRICAN JOURNAL OF BIOETHICS AND LAW | 2021年 / 14卷 / 01期

基金：

美国国家卫生研究院;

关键词：

GENOMIC RESEARCH;

D O I：

10.7196/SAJBL.2021.v14i1.740

中图分类号：

R-052 [医学伦理学];

学科分类号：

0101 ; 120402 ;

摘要：

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.

引用

页码：33 / 36

页数：4

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