Cargando…
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...
Autores principales: | , , |
---|---|
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 |
_version_ | 1784578000362143744 |
---|---|
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. |
format | Online Article Text |
id | pubmed-8487665 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT liddellkathleen patientdataownershipwhoownsyourhealth AT simondavida patientdataownershipwhoownsyourhealth AT lucassenanneke patientdataownershipwhoownsyourhealth |