Repurposing research data for commercial use: POPIA, a foil or a facilitator?

Townsend, Beverley; Gooden, Amy; Botes, Marietjie; Thaldar, Donrich

doi:10.17159/sajs.2023/15075

Cited by 2 publications

(2 citation statements)

References 27 publications

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“…In South Africa, publicly funded research is governed in part by the Intellectual Property Rights from Publicly Financed Research and Development Act 51 of 2008, 2008 (IPR Act). Section 2 of the IPR Act provides that intellectual property arising from publicly financed research must be protected, used, and commercialized in a way that benefits South Africa ( Townsend et al, 2023 ). The Draft Guidelines refer to publicly funded research, stating that it is a public good and should be made openly available without imposing unwarranted or unjustifiable limitations ( NHREC, 2023 ).…”

Section: Analysis Of the Draft Guidelinesmentioning

confidence: 99%

“…This occurs where the purpose for which the personal information is used changes, or the personal information is re-used for a different purpose ( ASSAf, 2023 ). Where personal information collected for previous research is sought to be used for a different purpose, the researcher must provide certain information, including: (1) the circumstances under which the personal information was collected; (2) how assurances will be made that the personal information will only be used for research and will not be published in an identifiable manner; (3) how the notification requirement in section 18 of POPIA will be complied with; and (4) whether permission has been obtained from the responsible party who originally processed the personal information ( ASSAf, 2023 ; Townsend et al, 2023 ).…”

Section: Analysis Of the Draft Guidelinesmentioning

confidence: 99%

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A pathway to strengthening open science: comments on the draft South African Ethics in Health Research Guidelines

Gooden

2024

Front. Pharmacol.

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The recently released draft South African Ethics in Health Research Guidelines: Principles, Processes and Structures (Draft Guidelines) by the National Health Research Ethics Council recognize open data and provide guiding principles for this in the context of health research in South Africa. While its inclusion is a positive development, there is room for improvement. Although the Draft Guidelines leverage the Draft National Policy on Data and Cloud, it lacks incorporation of other relevant government policies, notably the Draft National Open Science Policy, and fails to sufficiently detail the principles of open science and open access. This limited scope and lack of comprehensive definition and detailed guidance present challenges for researchers in conducting ethical and responsible health research in South Africa. It constrains the Draft Guidelines from fully aligning with national imperatives and from fostering African-centric approaches. To address these issues, it is recommended that the Draft Guidelines integrate broader policies and principles, enhance clarity through comprehensive definitions, provide detailed guidance on open access, and promote African-centric approaches. Implementing these solutions will strengthen the Draft Guidelines, aligning them with national visions of open science, and thereby harnessing the full potential of South Africa’s diverse scientific community in advancing health research.

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Section: Analysis Of the Draft Guidelinesmentioning

confidence: 99%

Section: Analysis Of the Draft Guidelinesmentioning

confidence: 99%

A pathway to strengthening open science: comments on the draft South African Ethics in Health Research Guidelines

Gooden

2024

Front. Pharmacol.

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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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Repurposing research data for commercial use: POPIA, a foil or a facilitator?

Cited by 2 publications

References 27 publications

A pathway to strengthening open science: comments on the draft South African Ethics in Health Research Guidelines

A pathway to strengthening open science: comments on the draft South African Ethics in Health Research Guidelines

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

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