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).
Highlights
The United Kingdom’s (UK) Data protection law requires that research processing of health data is in the “public interest”
If research processing passes that test, and meets the public interest threshold, The explanatory notes to the legislation note that the section of the legislation containing the requirement “specifies the conditions that must be met in order for special categories of data [ . . . ] to be processed for employment, health, archiving and research purposes”. (Data Protection Act 2018 Explanatory Notes 2018, p. 80)
The Data Protection Act 2018 establishes that processing will only meet the requirement under the research exception for a basis in UK law if the processing: (a) is necessary for archiving purposes, scientific or historical research purposes or statistical purposes, is carried out in accordance with Article 89(1) of the General Data Protection Regulation (GDPR), and is in the public interest (Section 10(2); Schedule 1, Part 1, s 4.)
Summary
The United Kingdom’s (UK) Data protection law requires that research processing of health data is in the “public interest”. The second advantage attached to unpacking the concept of public interest in the way we describe is that the test can be applied in different parts of data protection legislation, to yield different answers, without inconsistency It may yield different answers when assessing if it is in the public interest to process personal health data for research purposes without consent, as compared to when assessing if it is in the public interest to continue to process in the face of an objection. This conception of the concept of public interest is applied to demonstrate that, though a default route through to processing personal health data without consent can be defended, it is only in the public interest to trade off common interests in ways that can be justified as acceptable to those affected This requires preservation of individual privacy, and control over whether personal health data is used for research purposes, to the maximum extent possible. It is a concept that can be used to interpret and unpack the public interest test introduced into UK data protection law and to critique the trade-off, between privacy protection and health research, that UK and EU data protection legislation otherwise represents
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
