A3 Refereed book chapter or chapter in a compilation book
Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape
Authors: Tzortzatou Olga, Slokenberga Santa, Reichel Jane, da Costa Andrade Andreia, Barbosa Carla, Bekaert Sofie, van Veen Evert-Ben, Romeo-Casabona Carlos M., Cathaoir Katharina Ó., Chassang Gauthier, Debucquoy Annelies, Derèze Jean-Jacques, Dollé Laurent, Eaker Fält Sonja, Halouzka Radek, Hartlev Mette, Hisbergues Michael, Hoppe Nils, Huys Isabelle, Kindt Els, Befring Anne Kjersti, Kozera Lukasz, Krekora-Zajac Dorota, Lalova Teodora, Mayrhofer Michaela, Negrouk Anastassia, Pawlikowski Jakub, Penasa Simone, Pormeister Kärt, Rial-Sebbag Emmanuelle, Siapka Anastasia, Southerington Tom, Stenbeck Magnus, Šutalo Maja, Tomasi Marta, Valcke Peggy, Vella Falzon Ruth
Editors: Santa Slokenberga, Olga Tzortzatou, Jane Reichel
Publication year: 2021
Book title : GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe
Series title: Law, Governance and Technology Series
Volume: 43
First page : 397
Last page: 419
ISBN: 978-3-030-49387-5
eISBN: 978-3-030-49388-2
ISSN: 2352-1902
DOI: https://doi.org/10.1007/978-3-030-49388-2_22(external)
Web address : https://doi.org/10.1007/978-3-030-49388-2_22(external)
This chapter seeks to provide insight into the ways in which Member States leveraged the regulatory discretion afforded to them by the GDPR. Specifically, it reviews the biobank regulatory environment; whether and how derogations under Article 89(2) GDPR are enabled; the legal basis for scientific research and the role of consent in biobanking post-GDPR; the balance between individual rights and public interest in national law; and finally, the GDPR’s impact and future possibilities for biobanking. In exercising self-determination, Member States can, to a certain extent, align data protection requirements with their values and aspirations. Such alignment, though, could jeopardize collaborative research. In light of the need to bridge divergent legal and ethical requirements at a national and supranational level, the role of Research Ethics Committees (RECs) might prove to be essential.