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The European Health Data Space: Examining A New Era in Data Protection

The European Health Data Space: Examining A New Era in Data Protection

Author: Santa Slokenberga; Katharina Ó Cathaoir; Mahsa Shabani
Publisher: Routledge
ISBN: 9781032822884
Published In: March 2025
Format: Hardback
Jurisdiction: U.K. ? Disclaimer:
Countri(es) stated herein are used as reference only

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Description
Contents

Details

This timely volume provides a comprehensive examination of how the proposed new European Health Data Space (EHDS) legislation will impact upon health and genetic data, individual privacy, and providers of health services. Including contributions from some of the leading scholars in this area, this ground-breaking book will be key reading for students and researchers across Law and Public Health.

Part I:

Chapter One. Introduction: Transformation of electronic health data governance through the EHDS

Santa Slokenberga, Katharina Ó Cathaoir, Mahsa Shabani

Chapter Two. The EHDS and Electronic Health Records: GDPR+ or transforming patients’ rights?

Katharina Ó Cathaoir

Chapter Three. The right to insert and add information to my health record – does my doctor need to know this? A critical discussion of the right to insert information in an EHR using the example of data from direct-to-consumer genetic testing

Andelka M. Phillips

Chapter Four. European Health Data Space: A breakthrough in user control over health data in wellness apps?

Petra Müllerová

Part II: Secondary Use: Legal basis, confidentiality and commercial uses

Chapter Five. Transforming the secondary use of patient data in the European Health Data Space: A challenge for the patient’s right to medical confidentiality?

Daniela Spajić

Chapter Six. Striking the Balance: Genomic Data, Consent and Altruism in the European Health Data Space

Eila El Asry, Juli Mansnérus, Sandra Liede

Chapter Seven. Fair enough? Exploring the role of fairness in secondary uses of health data in the European Health Data Space

Patricia Cervera de la Cruz and Mahsa Shabani

Chapter Eight. The European Health Data Space: A New Paradigm for Secondary Uses of Health Data for Scientific Research?

Enrique Santamaría Echeverría

Part III. Adequate safeguards and Data Governance through Health Data Access Bodies

Chapter Nine. Secondary use of health data in the EHDS: public interest and the role of HDABs

Tjasa Petročnik

Chapter Ten. Administrative tools for balancing societal and individual interests – data protection safeguards and administrative procedural guarantees in secondary use in the European Health Data Space

Jane Reichel

Chapter Eleven. Federated networks and secondary uses of health data – challenges in ensuring appropriate safeguards for sharing health data under the GDPR and EHDS

Magdalena Kogut-Czarkowska and Mahsa Shabani

Chapter Twelve. EHDS: Transforming the role of technological platforms for health data analysis

Hrefna D Gunnarsdóttir

Chapter Thirteen. Conclusion: tracing key transformations in light of the primary and secondary use

Mahsa Shabani, Santa Slokenberga and Katharina Ó Cathaoir