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Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape

Authors :
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
Slokenberga, Santa
Tzortzatou, Olga
Reichel, Jane
Source :
GDPR and Biobanking ISBN: 9783030493875, GDPR and biobanking : individual rights, public interest and research regulation across Europe
Publication Year :
2021
Publisher :
Springer International Publishing, 2021.

Abstract

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.

Details

Language :
English
ISBN :
978-3-030-49387-5
978-3-030-49390-5
978-3-030-49388-2
ISSN :
23521902 and 23521910
ISBNs :
9783030493875, 9783030493905, and 9783030493882
Database :
OpenAIRE
Journal :
GDPR and Biobanking ISBN: 9783030493875, GDPR and biobanking : individual rights, public interest and research regulation across Europe
Accession number :
edsair.doi.dedup.....cd630310e34f5cc3608d6047cdf07df0