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Patient data ownership: who owns your health?

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 r...

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Autores principales: Liddell, Kathleen, Simon, David A, Lucassen, Anneke
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8487665/
https://www.ncbi.nlm.nih.gov/pubmed/34611493
http://dx.doi.org/10.1093/jlb/lsab023
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author Liddell, Kathleen
Simon, David A
Lucassen, Anneke
author_facet Liddell, Kathleen
Simon, David A
Lucassen, Anneke
author_sort Liddell, Kathleen
collection PubMed
description 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.
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spelling pubmed-84876652021-10-04 Patient data ownership: who owns your health? Liddell, Kathleen Simon, David A Lucassen, Anneke J Law Biosci Original Article 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. Oxford University Press 2021-10-01 /pmc/articles/PMC8487665/ /pubmed/34611493 http://dx.doi.org/10.1093/jlb/lsab023 Text en © The Author(s) 2021. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Article
Liddell, Kathleen
Simon, David A
Lucassen, Anneke
Patient data ownership: who owns your health?
title Patient data ownership: who owns your health?
title_full Patient data ownership: who owns your health?
title_fullStr Patient data ownership: who owns your health?
title_full_unstemmed Patient data ownership: who owns your health?
title_short Patient data ownership: who owns your health?
title_sort patient data ownership: who owns your health?
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8487665/
https://www.ncbi.nlm.nih.gov/pubmed/34611493
http://dx.doi.org/10.1093/jlb/lsab023
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