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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.
Sommario
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.
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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.
