Julia Nadine Doetsch, Vasco Dias, Inês Lopes, Regina Redinha, Henrique Barros
{"title":"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。","authors":"Julia Nadine Doetsch, Vasco Dias, Inês Lopes, Regina Redinha, Henrique Barros","doi":"10.1093/medlaw/fwac040","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":"31 2","pages":"247-271"},"PeriodicalIF":1.8000,"publicationDate":"2023-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"2","resultStr":"{\"title\":\"Record linkage of routine and cohort data of children in Portugal: challenges and opportunities when using record linkage as a tool for scientific research.\",\"authors\":\"Julia Nadine Doetsch, Vasco Dias, Inês Lopes, Regina Redinha, Henrique Barros\",\"doi\":\"10.1093/medlaw/fwac040\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":49146,\"journal\":{\"name\":\"Medical Law Review\",\"volume\":\"31 2\",\"pages\":\"247-271\"},\"PeriodicalIF\":1.8000,\"publicationDate\":\"2023-05-25\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"2\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Medical Law Review\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1093/medlaw/fwac040\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"LAW\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Medical Law Review","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/medlaw/fwac040","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"LAW","Score":null,"Total":0}
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.
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.