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

Abstract

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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“…In Portugal, health-related scientific research essentially relies on consent as legal grounds for personal data processing. Even though, the obligation to collect informed consent for the participation in non-interventional clinical studies can exceptionally be derogated by the determination of the Competent Ethics Commission, consent for the processing of personal data is still required in those cases, as the Portuguese data protection act clarified, before the GDPR [ 9 ]. Following the GDPR approval, the Portuguese new data protection act [Law n° 58/2019, 8 August] timidly touched upon the subject of scientific research, save from the possibility of giving consent to “certain areas of research” (inspired by recital 33, GDPR).…”

“…Thereby, the four main points are i) the importance of organizational trust and legitimacy 2 that leads to a societal benefit; ii) continuous request for consent as decisions may change with time (e.g. dynamic consent model [ 9 ]; iii) high transparency of data usage; iv) data linkage communication on the usage of data (e.g. written notifications, by mail or email) [ 12 ].…”