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    Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

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    Author
    Taylor, M; Whitton, T
    Date
    2020
    Source Title
    Laws
    Publisher
    MDPI AG
    University of Melbourne Author/s
    Taylor, Mark; Whitton, Tess
    Affiliation
    Melbourne Law School
    Melbourne Law School
    Metadata
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    Document Type
    Journal Article
    Citations
    Taylor, M. & Whitton, T. (2020). Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data. Laws, 9 (1), pp.1-23. https://doi.org/10.3390/laws9010006.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/258554
    DOI
    10.3390/laws9010006
    Abstract
    The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

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