Research and the meaning of ‘public interest’ in POPIA

Thaldar, Donrich

doi:10.17159/sajs.2022/13206

Cited by 4 publications

(1 citation statement)

References 3 publications

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“…Health data should be able to move freely for research purposes, as argued by Hallinan et al [7] for three major reasons that are largely in the public interest. [4][5][6][7] The first reason is that most health research depends entirely on the international exchange of personal data, [4,7] including research aimed at addressing questions that require comparing large datasets from multiple populations in different regions. [7] The second reason is that most health research necessitates the accessibility of health data to facilitate the synthesis and advancement of the research.…”

Section: The Significance Of Cross-border Data Sharing For Health Res...mentioning

confidence: 99%

Clarifying the legal requirement for cross-border sharing of health data in POPIA: Recommendations on the draft Code of Conduct for Research

Abdulrauf,

Adaji,

Ojibara

2024

S Afr J Bioethics Law

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The draft Code of Conduct for Research is an important initiative towards assisting the scientific community in complying with the provisions of the Protection of Personal Information Act 4 of 2013 (POPIA). However, its approach towards cross-border data sharing should be reconsidered to clarify the ambiguities inherent in the legal requirements for the cross-border sharing of health data in the POPIA. These ambiguities include the concept of ‘transfer of information’, the application of adequacy as a legal mechanism for transfer, the nature of consent for cross-border sharing and the scope of the recipient third party. We suggest that the draft Code of Conduct for Research can be improved by: Explaining or defining the concept of ‘transfer of information’ and when it applies to cross-border sharing in research Clarifying the application of adequacy as a legal mechanism for transfer vis-à-vis the other alternatives Expanding on the interpretation and application of consent as a legal mechanism for cross-border transfers Expanding the category of persons who may be recipients of personal information in a third country

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Section: The Significance Of Cross-border Data Sharing For Health Res...mentioning

confidence: 99%

Clarifying the legal requirement for cross-border sharing of health data in POPIA: Recommendations on the draft Code of Conduct for Research

Abdulrauf,

Adaji,

Ojibara

2024

S Afr J Bioethics Law

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The proposed Code of Conduct for Research in South Africa: despite good progress, unresolved issues remain

Gooden,

Thaldar

2024

Humanit Soc Sci Commun

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After a 3-year development process and several drafts, the Academy of Science of South Africa (ASSAf) has submitted its proposed Code of Conduct for Research (proposed CCR) to the South African Information Regulator for its consideration and approval. When approved, the proposed CCR will be an important legal instrument that will complement the Protection of Personal Information Act 4 of 2013 (POPIA) in governing research activity in the country—including data sharing by South African researchers with their collaborators in other countries. The proposed CCR resolves important issues that were present in previous drafts. However, three important issues require attention: (1) how the identifiability of data subjects is to be determined in research data; (2) how research data can be repurposed for commercial use; and (3) how open access genomic databases should be established in the South African legal framework. In addition, the proposed CCR introduces a new issue: a legally unsustainable exception from POPIA application for genetic data. All these issues considered, the proposed CCR needs revision ahead of its approval by the Information Regulator. Recommendations are made on how to resolve the remaining issues.

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How to interpret core concepts in POPIA? Recommendations on the draft Code of Conduct for Research

2023

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The draft Code of Conduct for Research is a welcome development, but there is room for improvement in the way that it interprets core concepts in POPIA. In particular, it should: remove the provision regarding consent to future research; clarify that special personal information is a subclass of personal information that must comply with an extra layer of requirements; not exclude an individual researcher employed by a research institution from qualifying as a responsible party; and clearly differentiate de-identification in POPIA from corresponding terms used in other jurisdictions.

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Research and the meaning of ‘public interest’ in POPIA

Cited by 4 publications

References 3 publications

Clarifying the legal requirement for cross-border sharing of health data in POPIA: Recommendations on the draft Code of Conduct for Research

Clarifying the legal requirement for cross-border sharing of health data in POPIA: Recommendations on the draft Code of Conduct for Research

The proposed Code of Conduct for Research in South Africa: despite good progress, unresolved issues remain

How to interpret core concepts in POPIA? Recommendations on the draft Code of Conduct for Research

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