Data Privacy, Data Property, and Data Sharing An Interdisciplinary Perspective for Post-pandemic Transnational Scientific Research

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

Francesca Incardona

Opportunities for Research with Data

Anders Sönnerborg

What Does Health Data Stand for Scientists and Lawyers?

Mariavittoria Catanzariti

An Overview of GDPR Obligations and Biomedical Research

Guido Scorza

Patients’, and Other Experts’, Perspectives

Lisa Norén

The Human-Centric Approach in Scientific Research: The AI Act and the New Frontiers of Research Ethics

Alessandro Mantelero

WHO “OWNS” DATA?

The Data Economy, Health Data and the Lexicon of Property: Comparative Remarks

Ermanno Calzolaio

Ownership or Control?

Giovanni Maria Riccio

Data Ownership and Data Markets: The Chinese Experience

Bingwan Xiong

Parts and Wholes: Developing Innovative Governance Mechanisms for Data Flows Beyond the Paradigms of Privacy and Property

Vagias Karavas

Data Ownership: Empowering Students in the Digital Age

Francesca Osima and Panagiotis Chatzimichail

Regulating Health Data: A Comparative Perspective

Nicolai Søderlund Kofod and Wen Xiang

SUSTAINABLE HEALTH DATA SHARING

Data-Related Ethics Issues in EU-Funded Research Projects

Edward S. Dove

Models of Data Sharing and Best Practices

Gabriele Rinck

Privacy-Preserving AI-Based Solutions

Nico Pfeifer

E-health and Older Persons (Between Age Discrimination and Data Protection Issues)

Claudia Morgana Cascione

The Role of the Cohort Coordination Board in Supporting Data Sharing and Data Harmonization Efforts in Europe as Part of Pandemic Preparedness

Lorenzo Maria Canziani, Ruth Joanna Davis, Ali Judd, Eugenia Rinaldi, Giorgia Bincoletto and Evelina Tacconelli

EUROPEAN HEALTH DATA SPACE AND BEYOND

Health Data in Europe—At the Crossroads of Data Protection and Data Sharing

Giorgio Resta

Health Data Sharing for Scientific Research: Closing Data “As Necessary” and Opening it “As Possible”

Giorgia Bincoletto

Resisting Transparency: The Paradox of the EU Vaccines Strategy

Deirdre Curtin and Saverio Della Corte

Realizing International Data Transfers for Health Research through Risk-based Regulation and Secure Infrastructure

Adrian Thorogood

Index

Biography

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.