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Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape

2021; Springer International Publishing; Linguagem: Inglês

10.1007/978-3-030-49388-2_22

2352-1910

Olga Tzortzatou, Santa Slokenberga, Jane Reichel, Andreia da Costa Andrade, Carla Barbosa, Sofie Bekaert, Evert-Ben van Veen, Carlos Romeo-Casabona, Katharina Ó Cathaoir, Gauthier Chassang, Annelies Debucquoy, Jean-Jacques Derèze, Laurent Dollé, Sonja Eaker Fält, Radek Halouzka, Mette Hartlev, Michael Hisbergues, Nils Hoppe, Isabelle Huys, Els Kindt, Anne Kjersti Befring, Łukasz Kozera, Dorota Krekora‐Zając, Teodora Lalova, Michaela Th. Mayrhofer, Anastassia Negrouk, Jakub Pawlikowski, Simone Penasa, Kärt Pormeister, Emmanuelle Rial‐Sebbag, Anastasia Siapka, Tom Southerington, Magnus Stenbeck, Maja Šutalo, Marta Tomasi, Peggy Valcke, Ruth Falzon,

Ethics in medical practice

Abstract 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.