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.
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 EuropeAt 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.
Mariavittoria Catanzariti is Assistant Professor in Legal Philosophy at University of Padua. Previously she covered different positions at European University Institute, as Jean Monnet Fellow, Research Associate and Research Fellow. Barrister in law since 2010, she obtained a PhD in Law from Roma Tre University in 2011; the Italian Scientific Qualification as Associate Professor in Legal Philosophy and Associate Professor and Full Professor in Legal Sociology. Her research interests focus on human rights and IT law.
Francesca Incardona holds a master's degree in Physics. She has worked in European research activities on technological and biomedical aspects, including HIV and COVID-19 research. Since 2008, she has been co-founder and CEO of the EuResist Network, a European Grouping for interdisciplinary HIV research, co-founded by Karolinska and Max Planck Institutes, and Universities of Cologne and Siena. She currently coordinates the EuCARE Horizon Europe project and has authored a book and co-authored multiple peer-reviewed publications.
Giorgio Resta (JD, University of Pisa) is a full professor of comparative law and vice-rector for international affairs at Roma Tre University (Italy). He is a member of the board of the Italian Association of Comparative Law and an associate member of the International Academy of Comparative Law. He is also an honorary member of the Italian Private Law Scholars Association and has written extensively on law and new technologies, data protection, and data ownership.
Anders Sönnerborg MD, PhD, is professor in infectious diseases and virology at Department of Medicine Huddinge, Karolinska Institute, and is also a senior consultant at Karolinska University Hospital. He has worked in HIV clinical care since 1983 and has done extensive international research in activities related to technological and biomedical aspects, including HIV and COVID-19. In 2008, he co-founded the EuResist Network. He is currently a work-package leader of the EuCARE Horizon Europe project. He has more than 500 publications in peer-reviewed journals.
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