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Data Portability in Health Research and Biobanking:

Legal Benchmarks for Appropriate Implementation

DOI https://doi.org/10.21552/edpl/2018/3/8

Gauthier Chassang, Tom Southerington, Olga Tzortzatou, Martin Boeckhout, Santa Slokenberga


This article examines the content of data portability right (II), operationalisation of data portability in health research context and related challenges (III) by considering both GDPR provisions and special Guidelines from the European Data Protection Board (ex-Article 29 Data Protection Working Party). We provide in depth analysis of the provisions and tables for easing the identification of potential implementation of data portability in health research contexts.
Keywords: Data Portability, Scientific Research, GDPR, Health Data, Data Subject's Rights, European Union

Gauthier Chassang, Lawyer, Inserm, Toulouse, France; Université Paul Sabatier Toulouse, France; US13, Infrastructure Biobanques, CS ELSI, Inserm, Paris, France; CS ELSI Expert, BBMRI-ERIC, Graz, Austria. For correspondence: <mailto:gauthier.chassang@bbmri-eric.eu>. Tom Southerington, Project Researcher, University of Turku, Finland; Project Director, Hospital District of Southwest Finland; General Counsel, Finnish Biobank Cooperative FINBB; CS ELSI Expert, BBMRI-ERIC, Graz, Austria. Supported by research consortia SWiPE 303667 funded by Strategic Research Council at the Academy of Finland and Tools for Digital Phenotyping and Making MyData Real funded by Business Finland. Olga Tzortzatou, Legal Consultant, Biomedical Research Foundation of the Academy of Athens, Greece; Data Consultant, Hellenic Health Foundation, Athens, Greece; Researcher, Uppsala University, Center for Research Ethics and Bioethics, Sweden; CS ELSI Expert, BBMRI-ERIC, Graz, Austria. Martin Boeckhout, Julius Center for Health Sciences and Primary Care, Department of Medical Humanities, University Medical Center Utrecht, The Netherlands. Santa Slokenberga, Postdoctoral Fellow, Faculty of Law, Lund University, Sweden; Researcher, Center for Research Ethics and Bioethics, Uppsala University, Sweden; Lecturer, Faculty of Law, Riga Stradins University, Latvia.

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