Patient data ownership: who owns your health?. Issue 2 (1st October 2021)

• Record Type: Journal Article
• Authors: Liddell, Kathleen; Simon, David A; Lucassen, Anneke
• Is Part Of: Journal of law and the biosciences. Volume 8:Issue 2(2021)
• Publication Date: 2021-10-01
• Subjects: property -- ownership -- health -- information and data -- consent -- digital health; Life sciences -- Law and legislation -- Periodicals; Science and law -- Periodicals; Law and biology -- Periodicals; Biotechnology -- Law and legislation -- Periodicals; Bioethics -- Periodicals; 344.0957
• DOI: 10.1093/jlb/lsab023
• Languages: English
• ISSNs: 2053-9711

Abstract

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.