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

Mark J. Taylor and Tess Whitton
Additional contact information
Mark J. Taylor: Melbourne Law School, University of Melbourne, Parkville VIC 3010, Australia
Tess Whitton: Melbourne Law School, University of Melbourne, Parkville VIC 3010, Australia

Laws, 2020, vol. 9, issue 1, 1-23

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).

Keywords: public interest; data protection; health research; secondary use; patient information (search for similar items in EconPapers)
JEL-codes: D78 E61 E62 F13 F42 F68 K0 K1 K2 K3 K4 (search for similar items in EconPapers)
Date: 2020
References: View complete reference list from CitEc
Citations:

Downloads: (external link)
https://www.mdpi.com/2075-471X/9/1/6/pdf (application/pdf)
https://www.mdpi.com/2075-471X/9/1/6/ (text/html)

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:gam:jlawss:v:9:y:2020:i:1:p:6-:d:320945

Access Statistics for this article

Laws is currently edited by Ms. Heather Liang

More articles in Laws from MDPI
Bibliographic data for series maintained by MDPI Indexing Manager ().