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    When can the Child Speak for Herself? The Limits of Parental Consent in Data Protection Law for Health Research


    Taylor, Mark J, Dove, Edward, Laurie, Graeme and Townend, David (2018) When can the Child Speak for Herself? The Limits of Parental Consent in Data Protection Law for Health Research. Medical Law Review, 26 (3). pp. 369-391. ISSN 0967-0742

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    Official URL: https://doi.org/10.1093/medlaw%2Ffwx052

    Abstract

    Draft regulatory guidance suggests that if the processing of a child’s personal data begins with the consent of a parent, then there is a need to find and defend an enduring consent through the child’s growing capacity and on to their maturity. We consider the implications for health research of the UK Information Commissioner’s Office’s (ICO) suggestion that the relevant test for maturity is the Gillick test, originally developed in the context of medical treatment. Noting the significance of the welfare principle to this test, we examine the implications for the responsibilities of a parent to act as proxy for their child. We argue, contrary to draft ICO guidance, that a data controller might legitimately continue to rely upon parental consent as a legal basis for processing after a child is old enough to provide her own consent. Nevertheless, we conclude that data controllers should develop strategies to seek fresh consent from children as soon as practicable after the data controller has reason to believe they are mature enough to consent independently. Techniques for effective communication, recommended to address challenges associated with Big Data analytics, might have a role here in addressing the dynamic relationship between data subject and processing. Ultimately, we suggest that fair and lawful processing of a child’s data will be dependent upon data controllers taking seriously the truism that consent is ongoing, rather than a one-time event: the core associated responsibility is to continue to communicate with a data subject regarding the processing of personal data.
    Item Type: Article
    Keywords: Big Data; Children; Data protection; Gillick; Medical research; Parental consent;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19926
    Identification Number: 10.1093/medlaw/fwx052
    Depositing User: Edward Dove
    Date Deposited: 03 Jun 2025 10:56
    Journal or Publication Title: Medical Law Review
    Publisher: Oxford University Press
    Refereed: Yes
    URI: https://mural.maynoothuniversity.ie/id/eprint/19926
    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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