Abstract
Data have become an exceptionally valuable resource. In light of the COVID-19 public health emergency, data sharing and the concept of open science has gathered momentum.1 The advantages and disadvantages of open science notwithstanding, a pressing issue for the scientific community to consider - particularly in relation to health research - relates to the de-identification of data, and the impact of the Protection of Personal Information Act 4 of 2013 (POPIA) on research activities in this context. For the purposes of this Commentary, 'health research' refers to scientific research designed to learn more about human health with a view to preventing, curing and treating diseases. This type of research invariably requires the use of personal information as defined in POPIA. On 23 September 2020, the Academy of Science of South Africa (ASSAf) announced that it would be embarking on a process to facilitate the development of a Code of Conduct for all scientific research activity with a view to submitting this Code to the Information Regulator for approval in July 2021.2 Accordingly, the purpose of this Commentary is to: (1) discuss data de-identification and related concepts;(2) consider how data de-identification applies in the context of scientific practice in South Africa;and (3) consider relevant data de-identification principles in selected relevant foreign jurisdictions. © 2021 Academy of Science of South Africa. All rights reserved.
Highlights
Discussions on POPIAIn light of the COVID-19 public health emergency, data sharing and the concept of open science has gathered momentum.[1] The advantages and disadvantages of open science notwithstanding, a pressing issue for the scientific community to consider – in relation to health research – relates to the de-identification of data, and the impact of the Protection of Personal Information Act 4 of 2013 (POPIA) on research activities in this context
Background to POPIAPOPIA was the result of a painfully slow law reform process that was initiated in 2000 by the South African Law Reform Commission
On 23 September 2020, the Academy of Science of South Africa (ASSAf) announced that it would be embarking on a process to facilitate the development of a Code of Conduct for all scientific research activity with a view to submitting this Code to the Information Regulator for approval in July 2021.2 the purpose of this Commentary is to: (1) discuss data de-identification and related concepts; (2) consider how data de-identification applies in the context of scientific practice in South Africa; and (3) consider relevant data de-identification principles in selected relevant foreign jurisdictions
Summary
In light of the COVID-19 public health emergency, data sharing and the concept of open science has gathered momentum.[1] The advantages and disadvantages of open science notwithstanding, a pressing issue for the scientific community to consider – in relation to health research – relates to the de-identification of data, and the impact of the Protection of Personal Information Act 4 of 2013 (POPIA) on research activities in this context. For the purposes of this Commentary, ‘health research’ refers to scientific research designed to learn more about human health with a view to preventing, curing and treating diseases. This type of research invariably requires the use of personal information as defined in POPIA. On 23 September 2020, the Academy of Science of South Africa (ASSAf) announced that it would be embarking on a process to facilitate the development of a Code of Conduct for all scientific research activity with a view to submitting this Code to the Information Regulator for approval in July 2021.2 the purpose of this Commentary is to: (1) discuss data de-identification and related concepts; (2) consider how data de-identification applies in the context of scientific practice in South Africa; and (3) consider relevant data de-identification principles in selected relevant foreign jurisdictions
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