关键词: GDPR health-related data processing human right to science supranational implementation

来  源:   DOI:10.1093/jlb/lsae004   PDF(Pubmed)

Abstract:
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.
摘要:
本文有助于探索与科学创新对健康相关环境产生的(迫在眉睫的)危害和(潜在的)对人类的利益有关的职责的潜在应用。特别是,它解决了科学人权与健康相关数据处理之间的交集,在生产中起着关键作用,生物医学知识的翻译和实施。本文的第一部分简要介绍了基于艺术的科学权解释。《联合国经济、文化权利国际公约》第15(1)(b)条,社会和文化权利(以下简称《经济、社会、文化权利国际公约》或《公约》)以及由此产生的国家在卫生和相关数据处理方面的义务。本文的第二部分定义了《经济、社会、文化权利国际公约》对欧盟成员国和欧盟的相关性。在第三部分,论文提出了如何对科学的人权和艺术下的义务。15(1)(b)ICESCR影响《通用数据保护条例》作为次要欧盟法律的解释和适用。通过审查使用科学权利来解释欧盟数据保护法的理由,并就与健康相关的数据处理领域的主要数据保护原则提供解释和应用指导,考虑到这项权利,目的是塑造欧盟数据治理框架,以满足这一人权的要求。在这样做的时候,本文旨在弥补欧盟数据保护法主要规则的解释和适用方面的差距。在与健康有关的背景下,这种标准化可以通过提及这一新兴的人权,有助于对现有规则进行连贯的解释和应用。在这种背景下,该文件确定了欧盟立法者可以采取的治理措施,以根据科学权的要求指导与健康相关的数据处理。
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