Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape

Research output: Chapter in book/report/conference proceedingContribution to book/anthologyResearchpeer review

Authors

  • Olga Tzortzatou
  • Santa Slokenberga
  • Jane Reichel
  • Andreia da Costa Andrade
  • Carla Barbosa
  • Sofie Bekaert
  • Evert Ben van Veen
  • Carlos M. Romeo-Casabona
  • Katharina 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
  • Lukasz Kozera
  • Dorota Krekora-Zajac
  • Teodora Lalova
  • Michaela 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 Vella Falzon

External Research Organisations

  • Academy of Athens
  • Uppsala University
  • Stockholm University
  • University of Coimbra
  • Ghent University
  • Mlc Foundation
  • University of the Basque Country
  • University of Copenhagen
  • Universite Toulouse III - Paul Sabatier (UT3)
  • Infrastructure Nationale Biobanques
  • Genotoul Societal
  • BBMRI.be
  • KU Leuven
  • Free University of Brussels (ULB)
  • Regional Biobank Centre in Uppsala Örebro healthcare region
  • Masaryk Memorial Cancer Institute
  • University of Oslo
  • BBMRI-ERIC
  • University of Warsaw
  • EORTC Data Center
  • University of Trento
  • University of Tartu
  • Plateforme Ethique et Biosciences (Genotoul Societal)
  • University of Turku
  • Karolinska Institutet
  • Law Office Maja Šutalo
  • University of Malta
  • Medical University of Lublin
View graph of relations

Details

Original languageEnglish
Title of host publicationGDPR and Biobanking
Subtitle of host publicationIndividual Rights, Public Interest and Research Regulation across Europe
Place of PublicationCham
PublisherSpringer Science and Business Media B.V.
Pages397-419
Number of pages23
ISBN (electronic)978-3-030-49388-2
ISBN (print)978-3-030-49387-5, 978-3-030-49390-5
Publication statusPublished - 6 Jan 2021

Publication series

NameLaw, Governance and Technology Series
Volume43
ISSN (Print)2352-1902
ISSN (electronic)2352-1910

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.

ASJC Scopus subject areas

Cite this

Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape. / Tzortzatou, Olga; Slokenberga, Santa; Reichel, Jane et al.
GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe. Cham: Springer Science and Business Media B.V., 2021. p. 397-419 (Law, Governance and Technology Series; Vol. 43).

Research output: Chapter in book/report/conference proceedingContribution to book/anthologyResearchpeer review

Tzortzatou, O, Slokenberga, S, Reichel, J, da Costa Andrade, A, Barbosa, C, Bekaert, S, van Veen, EB, Romeo-Casabona, CM, Cathaoir, K, Chassang, G, Debucquoy, A, Derèze, JJ, Dollé, L, Fält, SE, Halouzka, R, Hartlev, M, Hisbergues, M, Hoppe, N, Huys, I, Kindt, E, Befring, AK, Kozera, L, Krekora-Zajac, D, Lalova, T, Mayrhofer, M, Negrouk, A, Pawlikowski, J, Penasa, S, Pormeister, K, Rial-Sebbag, E, Siapka, A, Southerington, T, Stenbeck, M, Šutalo, M, Tomasi, M, Valcke, P & Vella Falzon, R 2021, Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape. in GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe. Law, Governance and Technology Series, vol. 43, Springer Science and Business Media B.V., Cham, pp. 397-419. https://doi.org/10.1007/978-3-030-49388-2_22
Tzortzatou, O., Slokenberga, S., Reichel, J., da Costa Andrade, A., Barbosa, C., Bekaert, S., van Veen, E. B., Romeo-Casabona, C. M., Cathaoir, K., Chassang, G., Debucquoy, A., Derèze, J. J., Dollé, L., Fält, S. E., Halouzka, R., Hartlev, M., Hisbergues, M., Hoppe, N., Huys, I., ... Vella Falzon, R. (2021). Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape. In GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe (pp. 397-419). (Law, Governance and Technology Series; Vol. 43). Springer Science and Business Media B.V.. https://doi.org/10.1007/978-3-030-49388-2_22
Tzortzatou O, Slokenberga S, Reichel J, da Costa Andrade A, Barbosa C, Bekaert S et al. Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape. In GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe. Cham: Springer Science and Business Media B.V. 2021. p. 397-419. (Law, Governance and Technology Series). doi: 10.1007/978-3-030-49388-2_22
Tzortzatou, Olga ; Slokenberga, Santa ; Reichel, Jane et al. / Biobanking Across Europe Post-GDPR : A Deliberately Fragmented Landscape. GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe. Cham : Springer Science and Business Media B.V., 2021. pp. 397-419 (Law, Governance and Technology Series).
Download
@inbook{51a37b2e1021439e9c325638d7da1293,
title = "Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape",
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{\textquoteright}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.",
author = "Olga Tzortzatou and Santa Slokenberga and Jane Reichel and {da Costa Andrade}, Andreia and Carla Barbosa and Sofie Bekaert and {van Veen}, {Evert Ben} and Romeo-Casabona, {Carlos M.} and Katharina Cathaoir and Gauthier Chassang and Annelies Debucquoy and Der{\`e}ze, {Jean Jacques} and Laurent Doll{\'e} and F{\"a}lt, {Sonja Eaker} and Radek Halouzka and Mette Hartlev and Michael Hisbergues and Nils Hoppe and Isabelle Huys and Els Kindt and Befring, {Anne Kjersti} and Lukasz Kozera and Dorota Krekora-Zajac and Teodora Lalova and Michaela Mayrhofer and Anastassia Negrouk and Jakub Pawlikowski and Simone Penasa and K{\"a}rt Pormeister and Emmanuelle Rial-Sebbag and Anastasia Siapka and Tom Southerington and Magnus Stenbeck and Maja {\v S}utalo and Marta Tomasi and Peggy Valcke and {Vella Falzon}, Ruth",
note = "Funding Information: The author wishes to thank Anastasia Siapka for her support during all the stages of this Chapter.",
year = "2021",
month = jan,
day = "6",
doi = "10.1007/978-3-030-49388-2_22",
language = "English",
isbn = "978-3-030-49387-5",
series = "Law, Governance and Technology Series",
publisher = "Springer Science and Business Media B.V.",
pages = "397--419",
booktitle = "GDPR and Biobanking",
address = "Germany",

}

Download

TY - CHAP

T1 - Biobanking Across Europe Post-GDPR

T2 - A Deliberately Fragmented Landscape

AU - Tzortzatou, Olga

AU - Slokenberga, Santa

AU - Reichel, Jane

AU - da Costa Andrade, Andreia

AU - Barbosa, Carla

AU - Bekaert, Sofie

AU - van Veen, Evert Ben

AU - Romeo-Casabona, Carlos M.

AU - Cathaoir, Katharina

AU - Chassang, Gauthier

AU - Debucquoy, Annelies

AU - Derèze, Jean Jacques

AU - Dollé, Laurent

AU - Fält, Sonja Eaker

AU - Halouzka, Radek

AU - Hartlev, Mette

AU - Hisbergues, Michael

AU - Hoppe, Nils

AU - Huys, Isabelle

AU - Kindt, Els

AU - Befring, Anne Kjersti

AU - Kozera, Lukasz

AU - Krekora-Zajac, Dorota

AU - Lalova, Teodora

AU - Mayrhofer, Michaela

AU - Negrouk, Anastassia

AU - Pawlikowski, Jakub

AU - Penasa, Simone

AU - Pormeister, Kärt

AU - Rial-Sebbag, Emmanuelle

AU - Siapka, Anastasia

AU - Southerington, Tom

AU - Stenbeck, Magnus

AU - Šutalo, Maja

AU - Tomasi, Marta

AU - Valcke, Peggy

AU - Vella Falzon, Ruth

N1 - Funding Information: The author wishes to thank Anastasia Siapka for her support during all the stages of this Chapter.

PY - 2021/1/6

Y1 - 2021/1/6

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85120440126&partnerID=8YFLogxK

U2 - 10.1007/978-3-030-49388-2_22

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

M3 - Contribution to book/anthology

AN - SCOPUS:85120440126

SN - 978-3-030-49387-5

SN - 978-3-030-49390-5

T3 - Law, Governance and Technology Series

SP - 397

EP - 419

BT - GDPR and Biobanking

PB - Springer Science and Business Media B.V.

CY - Cham

ER -

By the same author(s)