患者数据所有权:谁拥有你的健康?

IF 2.5 2区 哲学 Q1 ETHICS Journal of Law and the Biosciences Pub Date : 2021-10-01 eCollection Date: 2021-07-01 DOI:10.1093/jlb/lsab023
Kathleen Liddell, David A Simon, Anneke Lucassen
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引用次数: 20

摘要

本文从英国法律和政策的角度回答了两个问题:(i)健康信息是财产吗?(ii)应该是这样吗?我们认为,健康信息的特殊特征使其不适合在没有广泛的数据特定规则体系(如管理知识产权的规则)的情况下授予产权。此外,我们认为,即使制定了一套广泛的规则,财产框架管理健康信息的优势也很小:财产化不太可能增强患者的自决,提高市场效率,为患者提供数据经济中的立足点,澄清信息的合法用途,或鼓励数据驱动的创新。更好的方法是减少而不是增加对房地产的依赖。我们建议采用一种具有四个标志性特征的监管模式:(i)对个人健康数据提供类似于GDPR的实质性保护,对如何、何时以及由谁访问、使用和传输患者数据进行透明限制;(ii)相关利益相关者的意见;(3)互操作性;(四)加大对健康数据服务模式的研究,而不是商品模式。
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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 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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来源期刊
Journal of Law and the Biosciences
Journal of Law and the Biosciences Medicine-Medicine (miscellaneous)
CiteScore
7.40
自引率
5.90%
发文量
35
审稿时长
13 weeks
期刊介绍: The Journal of Law and the Biosciences (JLB) is the first fully Open Access peer-reviewed legal journal focused on the advances at the intersection of law and the biosciences. A co-venture between Duke University, Harvard University Law School, and Stanford University, and published by Oxford University Press, this open access, online, and interdisciplinary academic journal publishes cutting-edge scholarship in this important new field. The Journal contains original and response articles, essays, and commentaries on a wide range of topics, including bioethics, neuroethics, genetics, reproductive technologies, stem cells, enhancement, patent law, and food and drug regulation. JLB is published as one volume with three issues per year with new articles posted online on an ongoing basis.
期刊最新文献
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