遗传数据并不总是个人的——分解了遗传数据的可识别性和敏感性。

IF 2.5 2区 哲学 Q1 ETHICS Journal of Law and the Biosciences Pub Date : 2023-07-24 eCollection Date: 2023-07-01 DOI:10.1093/jlb/lsad029
Johanna Rahnasto
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引用次数: 0

摘要

在欧盟和美国,基因数据被认为是一种特殊类型的数据,需要加强隐私保护。可识别性和敏感性是这两个司法管辖区监管框架的核心支柱:隐私问题源于基因数据能够识别个人并揭示有关个人的敏感信息的假设。但并非所有的基因数据都是可识别和敏感的,基因数据在这些问题上也不一定与其他类型的大数据不同。本文认为,需要一种更细致入微的方法来评估基因数据使用对隐私利益构成的威胁。所涉及的隐私利益应根据拟议的用途、所涉数据的数量、其独特性和信息内容加以区分。当这些因素被分解后,很明显,通过更多地关注基因数据的使用方式,而不是关注它们作为一种特殊数据类别的地位,这两种监管方案都可以更好地实现它们的目标。
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Genetic data are not always personal-disaggregating the identifiability and sensitivity of genetic data.

In both the EU and USA, genetic data are recognized as a special category of data that requires heightened privacy protection. Identifiability and sensitivity are central pillars of the regulatory framework in both jurisdictions: the privacy concerns stem from the assumption that genetic data are capable of identifying the individual and reveals sensitive information about them. But not all genetic data are identifiable and sensitive, nor are genetic data necessarily different from other types of big data in terms of these issues. This article argues that a more nuanced approach is needed to assess the threat to privacy interests posed by uses of genetic data. The privacy interests involved should be distinguished in terms of proposed use, the amount of data in question, and its uniqueness and informational content. When these factors are disaggregated, it is clear that both regulatory schemes could better achieve their goals by focusing more on the ways genetic data can be used rather than on their status as a special category of data.

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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.
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