Data Privacy, Data Property, and Data Sharing

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This book addresses the controversial issues surrounding data sharing, including data protection, ownership and reuse, and the related ethical considerations. It encourages interdisciplinary dialogue on the use of health data in Europe and beyond.

The recent adoption of the EU Regulation on the European Health Data Space is a significant development in European data law. While the need to protect the confidentiality of information and control over personal data — and, more generally, fundamental rights, particularly those of vulnerable people — is undeniable, the importance of using data for public interest, such as in healthcare and scientific research, has been brought to the fore by the Covid-19 pandemic.

This book addresses the controversial issues surrounding data sharing, including data protection, ownership and reuse, and the related ethical considerations. With contributions from experts in various fields, including medicine and law, it encourages interdisciplinary dialogue on the use of health data in Europe and beyond.

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Preface. Acknowledgements and Funding. SCIENTIFIC RESEARCH AT THE CROSSROADS OF THE LAW AND ETHICS OF HEALTH DATA. Emerging Issues in Transnational Biomedical Research: The Value of Patient Cohorts and Databases. Opportunities for Research with Data. What Does Health Data Stand for Scientists and Lawyers? An Overview of GDPR Obligations and Biomedical Research. Patients’, and Other Experts’, Perspectives. The Human-Centric Approach in Scientific Research: The AI Act and the New Frontiers of Research Ethics. WHO “OWNS” DATA? The Data Economy, Health Data and the Lexicon of Property: Comparative Remarks. Ownership or Control? Data Ownership and Data Markets: The Chinese Experience. Parts and Wholes: Developing Innovative Governance Mechanisms for Data Flows Beyond the Paradigms of Privacy and Property. Data Ownership: Empowering Students in the Digital Age. Regulating Health Data: A Comparative Perspective. SUSTAINABLE HEALTH DATA SHARING. Data-Related Ethics Issues in EU-Funded Research Projects. Models of Data Sharing and Best Practices. Privacy-Preserving AI-Based Solutions. E-health and Older Persons (Between Age Discrimination and Data Protection Issues). The Role of the Cohort Coordination Board in Supporting Data Sharing and Data Harmonization Efforts in Europe as Part of Pandemic Preparedness. EUROPEAN HEALTH DATA SPACE AND BEYOND. Health Data in Europe—At the Crossroads of Data Protection and Data Sharing. Health Data Sharing for Scientific Research: Closing Data “As Necessary” and Opening it “As Possible”. Resisting Transparency: The Paradox of the EU Vaccines Strategy. Realizing International Data Transfers for Health Research through Risk-based Regulation and Secure Infrastructure. Index.