GDPR and biobanking : individual rights, public interest and research regulation across Europe / Santa Slokenberga, Olga Tzortzatou, Jane Reichel, editors.
Slokenberga, Santa, 1987- editor.; Tzortzatou, Olga, editor.; Reichel, Jane, editor.
2021
K3611.H86
Available Online

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Title
GDPR and biobanking : individual rights, public interest and research regulation across Europe / Santa Slokenberga, Olga Tzortzatou, Jane Reichel, editors.
ISBN
9783030493882 (electronic bk.)
3030493881 (electronic bk.)
9783030493899 (print)
303049389X
9783030493905 (print)
3030493903
3030493873
9783030493875
DOI
https://doi.org/10.1007/978-3-030-49388-2
Publication Details
Cham : Springer, 2021.
Language
English
Description
1 online resource
Item Number
10.1007/978-3-030-49388-2 doi
Call Number
K3611.H86
Dewey Decimal Classification
344.40321783
Summary
This open access book focuses on the discrepancies in biobank research regulations that are among the most significant hurdles to effective research collaboration. The General Data Protection Regulation (GDPR) has established stringent requirements for the processing of health and genetic data, while simultaneously allowing considerable multi-level exceptions for the purposes of scientific research. In addition to directly applicable exceptions, the GDPR places the regulatory responsibility for further defining how the Member States strike a balance between the individuals' rights and the public interest in research within their national legal orders. Since Member States' approaches to the trade-off between data subjects' rights on the one hand, and appropriate safeguards on the other, differ according to their ethical and legal traditions, their data protection requirements for research also differ considerably. This study takes a comprehensive approach to determine how the GDPR affects regulatory regimes on the use of personal data in biobanking research, with a particular focus on the balance between individuals' rights, public interest and scientific research. In this regard, it has two main goals: first, to scrutinize the GDPR research regime, its objective and constitutive elements, the impact it has on biobanking, and its role in a changing EU landscape post-Brexit; and second, to examine how various exceptions have been operationalized nationally, and what challenges and opportunities this diversification entails. The book not only captures the complexity GDPR creates for biobanking, but also sheds light on various approaches to tackling the corresponding challenges. It offers the first comprehensive analysis of GDPR for biobanking, and the most up-to-date overview of the national biobank regulatory frameworks in Europe.
Access Note
Open access.
Digital File Characteristics
text file
PDF
Source of Description
Online resource; title from PDF title page (SpringerLink, viewed March 5, 2021).
Added Author
Slokenberga, Santa, 1987- editor.
Tzortzatou, Olga, editor.
Reichel, Jane, editor.
Series
Law, governance and technology series ; v. 43. 2352-1902
Available in Other Form
GDPR and biobanking.
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Part I Setting the scene
Introduction: Individual rights, the public interest and biobank research 4000 (8)
Genetic data and privacy protection
Part II GDPR and European responses
Biobank governance and the impact of the GDPR on the regulation of biobank research
Controller' and processor's responsibilities in biobank research under GDPR
Individual rights in biobank research under GDPR
Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research
A Pan-European analysis of Article 89 implementation and national biobank research regulations
EEA, Switzerland analysis of GDPR requirements and national biobank research regulations
Part III National insights in biobank regulatory frameworks
Selected 10-15 countries for reports: Germany
Greece
France
Finland
Sweden
United Kingdom
Part IV Conclusions
Reflections on individual rights, the public interest and biobank research, ramifications and ways forward.

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