Journal article

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

Mark Taylor, Edward S Dove, Graeme Laurie, David Townend

Medical Law Review | Oxford University Press (OUP) | Published : 2018

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..

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University of Melbourne Researchers

Grants

Awarded by Wellcome Senior Investigator Award entitled 'Confronting the Liminal Spaces of Health Research Regulation'


Funding Acknowledgements

We would like to thank the editors and anonymous peer-reviewers for their very helpful comments. Any remaining errors are our own. The contributions to this article from Edward Dove and Graeme Laurie are supported by Wellcome Senior Investigator Award entitled 'Confronting the Liminal Spaces of Health Research Regulation' (Award No WT103360MA).