Dove, Edward and Chen, Jiahong (2020) Should consent for data processing be privileged in health research? A comparative legal analysis. International Data Privacy Law, 10 (2). pp. 117-131. ISSN 2044-3994
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Abstract
Key Points
Several recent data protection laws appear to afford a privileged position to scientific research,
including health research. Provisions that might
otherwise apply to data subjects and data controllers, including rights exercisable by data subjects against controllers, are lifted or lessened.
However, when it comes to considering whether
consent should serve as the lawful basis for processing data in the health research context, a fair
degree of policy and regulatory divergence
emerges. This divergence seems to stem from a
normative link that some draw between consent
as a research ethics principle and consent as a
lawful basis in data protection law.
We look at the EU General Data Protection
Regulation (GDPR) and three national laws, either implementing the GDPR or inspired by it, to
provide points of comparison: South Africa’s
Protection of Personal Information Act, 2013,
the UK’s Data Protection Act 2018, and Ireland’s
Health Research Regulations 2018. We supplement this analysis by considering other relevant
laws and regulations governing health research in
these jurisdictions.
We argue that there is merit in distinguishing research ethics consent from data processing consent, to avoid what we call ‘consent
misconception’, and come to advocate a middle ground approach in data protection law, ie one
that does not mandate consent as the lawful basis
for processing personal data in health research
projects—but does encourage it. This approach,
we argue, achieves the best balance for protecting
data subject/research participant rights and interests and promoting socially valuable health
research.
Item Type: | Article |
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Keywords: | consent; data processing; privileged; health research; comparative; legal analysis; |
Academic Unit: | Assisting Living & Learning,ALL institute Faculty of Social Sciences > Law |
Item ID: | 19907 |
Identification Number: | 10.1093/IDPL/IPZ023 |
Depositing User: | Edward Dove |
Date Deposited: | 27 May 2025 14:31 |
Journal or Publication Title: | International Data Privacy Law |
Publisher: | Oxford University Press |
Refereed: | Yes |
Related URLs: | |
URI: | https://mural.maynoothuniversity.ie/id/eprint/19907 |
Use Licence: | This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here |
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