在与健康有关的数据处理中落实科学人权。

IF 2.5 2区 哲学 Q1 ETHICS Journal of Law and the Biosciences Pub Date : 2024-03-16 eCollection Date: 2024-01-01 DOI:10.1093/jlb/lsae004
Fruzsina Molnár-Gábor
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引用次数: 0

摘要

本文有助于探讨在与健康有关的背景下,如何将与勤勉地预见科学创新对人类造成的(即将发生的)伤害和(潜在的)益处有关的义务潜在地应用于健康领域。特别是,本文探讨了科学人权与健康相关数据处理之间的交集,后者在生物医学知识的生产、转化和实施中发挥着关键作用。本文第一部分简要回顾了根据《世界人权宣言》第 15(1)(b)条对科学权的解释。本文第一部分简要回顾了联合国《经济、社会、文化权利国际公约》(以下简称《经 济、社会、文化权利国际公约》或《公约》)第 15 (1) (b)条对科学权的解释,以及由此产生 的各国在健康和相关数据处理方面的义务。本文第二部分界定了《经济、社会、文化权利国际公约》与欧盟成员国和欧盟的相关性。第三部分提出了科学人权和《经济、社会、文化权利国际公约》第 15(1)(b)条规定的义务的论点。经济、社会、文化权利国际公约》第 15 (1) (b) 条规定的义务如何影响作为欧盟次级法律的《一般数据保护条例》的解释和适用。通过研究使用科学权来解释欧盟数据保护法的理由,并在考虑到这一权利的情况下,就健康相关数据处理领域的主要数据保护原则提供解释和应用指导,目的是形成欧盟数据治理框架,以满足这一人权的要求。在此过程中,本文件旨在弥补欧盟数据保护法主要规则在解释和应用方面的差距。在与健康相关的背景下,这种标准化有助于参照这项新出现的人权,对现有规则进行一致的解释和应用。在此背景下,本文确定了欧盟立法者可采取的治理措施,以指导健康相关数据的处理符合科学权的要求。
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Implementing the human right to science in the context of health-related data processing.

This paper contributes to the exploration of the potential application of duties related to the diligent anticipation of the (imminent) harms and (potential) benefits to humans that scientific innovation engenders to health-related contexts. In particular, it addresses the intersection between the human right to science and health-related data processing, which plays a key role in the production, translation and implementation of biomedical knowledge. The first part of the paper provides a brief recap of the interpretation of the right to science based on Art. 15 (1) (b) of the United Nations International Covenant on Economic, Social and Cultural Rights (hereafter ICESCR or Covenant) and the resulting obligations for States in the context of health and related data processing. The second part of the paper defines the relevance of the ICESCR for EU Member States and the European Union. In the third part, theses are put forward on how the human right to science and the obligations under Art. 15 (1) (b) ICESCR influence the interpretation and application of the General Data Protection Regulation as secondary EU law. By examining the justifications for using the right to science to interpret EU data protection law and by providing interpretation and application guidance on the main data protection principles in the area of health-related data processing, taking this right into account, the aim is to shape the EU data governance framework to meet the requirements of this human right. In doing so, the paper aims to close the gaps in the interpretation and application of the main rules of EU data protection law. Such standardization in the health-related context can contribute to a coherent interpretation and application of existing rules by referring to this emerging human right. Against this background, the paper identifies governance measures that the EU legislator could take to guide the processing of health-related data in line with the requirements of the right to science.

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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
The new EU-US data protection framework's implications for healthcare. The new regulation of non-medical neurotechnologies in the European Union: overview and reflection. Implementing the human right to science in the context of health: introduction to the special issue. Biosimilar approval pathways: comparing the roles of five medicines regulators. Industry price guarantees for publicly funded medicines: learning from Project NextGen for pandemics and beyond.
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