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Patient data ownership: who owns your health?

Authors :
David Simon
Kathleen Liddell
Anneke Lucassen
Lucassen, Anneke [0000-0003-3324-4338]
Apollo - University of Cambridge Repository
Source :
Journal of Law and the Biosciences
Publication Year :
2021
Publisher :
Oxford University Press, 2021.

Abstract

This article answers two questions from the perspective of United Kingdom law and policy: (i) is health information property? and (ii) should it be? We argue that special features of health information make it unsuitable for conferral of property rights without an extensive system of data-specific rules, like those that govern intellectual property. Additionally, we argue that even if an extensive set of rules were developed, the advantages of a property framework to govern health information would be slight: propertization is unlikely to enhance patient self-determination, increase market efficiency, provide patients a foothold in the data economy, clarify legal uses of information, or encourage data-driven innovation. The better approach is to rely less, not more, on property. We recommend a regulatory model with four signature features: (i) substantial protection for personal health data similar to the GDPR with transparent limits on how, when, and by whom patient data can be accessed, used, and transmitted; (ii) input from relevant stakeholders; (iii) interoperability; and (iv) greater research into a health-data service, rather than goods, model.

Details

Language :
English
ISSN :
20539711
Volume :
8
Issue :
2
Database :
OpenAIRE
Journal :
Journal of Law and the Biosciences
Accession number :
edsair.doi.dedup.....dbbe9fd4d62ded1f146d137d855a9acd