GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe

Privacy and Data Protection

GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe

Edited by Santa Slokenberga · Olga Tzortzatou · Jane Reichel
Springer-Verlag January 2021

Specifications

ISBN-13
9783030493875
Publisher
Springer-Verlag
Publication
January 2021
Format
Hardback
Jurisdiction
Switzerland ? Countri(es) for reference only

Details

This 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.

Table of Contents

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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