Patient data ownership: who owns your health?
Simon, David A
J Law Biosci
Oxford University Press (OUP)
MetadataShow full item record
Liddell, K., Simon, D. A., & Lucassen, A. (2021). Patient data ownership: who owns your health?. J Law Biosci, 8 (2), lsab023. https://doi.org/10.1093/jlb/lsab023
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.
consent, digital health, health, information and data, ownership, property
Liddell gratefully acknowledges the support by the Novo Nordisk Foundation for the scientifically independent Collaborative Research Program for Biomedical Innovation Law (grant NNF17SA0027784). Simon gratefully acknowledges the financial support from the Academy of Finland research project, Fairness, Morality and Equality in international and European Intellectual Property Law (FAME-IP). All authors gratefully acknowledge support from the NIHR Southampton Biomedical Research Centre.
Novo Nordisk Foundation (via University of Copenhagen) (NNF17SA0027784)
External DOI: https://doi.org/10.1093/jlb/lsab023
This record's URL: https://www.repository.cam.ac.uk/handle/1810/321539
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