葡萄牙儿童常规和队列数据的记录链接:使用记录链接作为科学研究工具时的挑战和机遇。

IF 1.8 4区 医学 Q1 LAW Medical Law Review Pub Date : 2023-05-25 DOI:10.1093/medlaw/fwac040
Julia Nadine Doetsch, Vasco Dias, Inês Lopes, Regina Redinha, Henrique Barros
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引用次数: 2

摘要

将记录联系起来可以作为科学研究的有用工具,并促进地方决策。本文探讨了研究人员在葡萄牙将常规收集的健康和教育数据与儿童队列数据作为科学研究工具合法联系起来时面临的挑战和机遇。如果满足三个条件,这种联系可以在葡萄牙合法进行。首先,数据处理的目的是合法的,比如科学研究。其次,数据链接符合作为数据控制者或处理者的研究实体和研究人员的法律义务,并尊重儿童作为数据主体的权利。最后,数据链接是基于对孩子负有父母责任的人的明确书面同意。到目前为止,《通用数据保护条例》在葡萄牙的实施并没有促进记录联系。有人认为,需要在欧盟和欧洲经济区成员国之间进一步协调实施该法规,为共同利益建立科学研究记录联系的最小共享分母,包括没有明确同意的情况下。
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Record linkage of routine and cohort data of children in Portugal: challenges and opportunities when using record linkage as a tool for scientific research.

Linking records could serve as a useful tool for scientific research and as a facilitator for local policymaking. This article examines the challenges and opportunities for researchers to lawfully link routinely collected health and education data with cohort data of children when using it as a tool for scientific research in Portugal. Such linking can be lawfully conducted in Portugal if three requirements are met. First, data processing pursues a legitimate purpose, such as scientific research. Secondly, data linking complies with the legal obligations of research entities and researchers, acting as data controllers or processors, and it respects the rights of children as data subjects. Finally, data linking is based on the explicit written consent of those with parental responsibility for the child. So far, the implementation of the General Data Protection Regulation in Portugal has not facilitated record linkage. It is argued that further harmonised implementation of that Regulation across European Union and European Economic Area Member States, establishing a minimum shared denominator for record linkage in scientific research for the common good, including without explicit consent, is needed.

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来源期刊
Medical Law Review
Medical Law Review MEDICAL ETHICS-
CiteScore
3.10
自引率
11.80%
发文量
50
审稿时长
>12 weeks
期刊介绍: The Medical Law Review is established as an authoritative source of reference for academics, lawyers, legal and medical practitioners, law students, and anyone interested in healthcare and the law. The journal presents articles of international interest which provide thorough analyses and comment on the wide range of topical issues that are fundamental to this expanding area of law. In addition, commentary sections provide in depth explorations of topical aspects of the field.
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