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

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

Author: Santa Slokenberga; Olga Tzortzatou; Jane Reichel
Publisher: Springer-Verlag
ISBN: 9783030493875
Published In: January 2021
Format: Hardback
Jurisdiction: Switzerland ? Disclaimer:
Countri(es) stated herein are used as reference only

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Description
Contents

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.

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: