MURAL - Maynooth University Research Archive Library



    Should consent for data processing be privileged in health research? A comparative legal analysis


    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

    [thumbnail of ED_should.pdf]
    Preview
    Text
    ED_should.pdf
    Available under License Creative Commons Attribution Non-commercial Share Alike.

    Download (199kB) | Preview

    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
    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

    Repository Staff Only (login required)

    Item control page
    Item control page

    Downloads

    Downloads per month over past year

    Origin of downloads