Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape

Autor: Dorota Krekora-Zajac, Gauthier Chassang, Anastassia Negrouk, Evert-Ben van Veen, Jane Reichel, Katharina Ó Cathaoir, Anne Kjersti Befring, Maja Šutalo, Isabelle Huys, Michaela Th. Mayrhofer, Emmanuelle Rial-Sebbag, Carla Barbosa, Olga Tzortzatou, Anastasia Siapka, Mette Hartlev, Nils Hoppe, Kärt Pormeister, Jakub Pawlikowski, Peggy Valcke, Marta Tomasi, Jean-Jacques Derèze, Lukasz Kozera, Andreia da Costa Andrade, Ruth Falzon, Sofie Bekaert, Teodora Lalova, Michael Hisbergues, Radek Halouzka, Magnus Stenbeck, Laurent Dollé, Santa Slokenberga, Simone Penasa, Carlos M. Romeo-Casabona, Els Kindt, Tom Southerington, Annelies Debucquoy, Sonja Eaker Fält
Přispěvatelé: Slokenberga, Santa, Tzortzatou, Olga, Reichel, Jane
Jazyk: angličtina
Rok vydání: 2021
Předmět:
Zdroj: GDPR and Biobanking ISBN: 9783030493875
GDPR and biobanking : individual rights, public interest and research regulation across Europe
ISSN: 2352-1902
2352-1910
Popis: This chapter seeks to provide an insight into how the regulatory discretion the GDPR has left to the Member States has been used. It reviews the biobank regulatory environment; whether and how derogations under Article 89(2) GDPR are enabled; the legal basis for scientifc research and role of consent in biobanking post-GDPR; the balance between individual rights and public interest in national law; and fnally, the GDPR’s impact and future possibilities for biobanking. While in exercising their national self-determination the Member States have some possibility to tailor data protection requirements corresponding to their values and aspirations, it risks coming with implications, jeopardizing collaborative research. At this point, it could be argued that Research Ethics Committees (RECs) may have a considerable role to play in navigating the gap between the legal and ethical requirements in both a national as well as a cross-border context.
Databáze: OpenAIRE