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.
Highlights
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
If patients are not considered owners of their health data, why does the law often require patient consent prior to the use of personal health data? And why, for example, are patients sometimes required to re-consent prior to medical research using data collected at an earlier time point? One reason is that the law protects health information through a variety of non-proprietary frameworks
Organizations, and entities assert ownership in health information, many UK lawyers take the view that information per se cannot be the subject of property—and, nobody owns health data
Summary
Data science platforms cannot afford to be merely ‘technical’, but need to account for legal and ethical issues that surround data development and use Many think that these questions can be answered by turning to a property analysis of health data—by asking and answering the question, ‘Who owns the information?’14 And, perhaps unsurprisingly, many—the Secretary of State for Health, hospital patients, NHS Trusts, medical and research professionals, pharmaceutical and diagnostic companies, biobanks, etc.—claim they own it.[15] Others argue that the law. (1) any and all data generated, created, or collected and retained; (2) in any form or medium; (3) by the National Health Service (NHS); (4) relating to an individual patient; (5) in, during, or as part of a clinical or clinical research encounter.[17] This definition is broad, but not exhaustive of data that could reasonably be considered patient data.[18] It includes, for example, the data typically stored in electronic healthcare and clinical research records, as well as human genetic data.
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