Record linkage of routine and cohort data of children in Portugal: challenges and opportunities when using record linkage as a tool for scientific research

记录链接 联动装置(软件) 促进者 欧洲联盟 队列 心理学 法学 政治学 计算机科学 公共关系 业务 医学 环境卫生 人口 生物化学 化学 内科学 基因 经济政策
作者
Julia Nadine Doetsch,Vasco Dias,Inês Camarinha Lopes,Regina Redinha,Henrique Barros
出处
期刊:Medical Law Review [Oxford University Press]
卷期号:31 (2): 247-271 被引量:1
标识
DOI:10.1093/medlaw/fwac040
摘要

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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