Program

Welcome greetings

Davide Bassi - Rector of the University of Trento
Gianni Santucci - Director of the Department of Legal Sciences
Giuseppe Bernardi - President “Fondazione prof. Alessio Pezcoller - Trento”

Giovanni Pascuzzi, University of Trento
A Law & Technology Approach to the Law of Biobanking

Umberto Izzo, University of Trento
The Role of Technology in Answering to the Regulatory Needs of Research Biobanking: General Remarks and Interests at Stake

Mattia Barbareschi, Trentino Biobank - APSS di Trento
The Reality of Biobanking Regulation from a Biobanker’s Perspective: Scientific and Managerial Premises and Unresolved Issues

FIRST SESSION: PROPERTY, PRIVACY & INFORMED CONSENT

Gideon Parchomovsky, University of Pennsylvania
Properties of Biobanks

Stephen Munzer, UCLA School of Law
Privacy and Ownership: Research Biobanks Meet Synthetic Biology

Roger Brownsword, King’s College - London
Regulating Biobanks: Another Triple Bottom Line

Jane Kaye, University of Oxford
Protecting Privacy in the World of Global Biobanking

Eric Feldman, University of Pennsylvania
The Genetic Information Nondiscrimination Act: A Solution in Search of a Problem?

Francesco Pizzetti, President of the Italian Data Protection Authority
Personal Health Data and Research Biobanking: The Italian Data Protection Authority View

Mariachiara Tallacchini, Cattolica University of Piacenza
Human Tissues in the ‘Public Space’: Beyond the Property/Privacy Dichotomy

Amedeo Santosuosso, University of Pavia
Should Privacy Be Abolished in Biobanking?

Andrea Rossato, University of Trento
Digital Architectures and the Regulation of Research Biobanks

Paolo Guarda, University of Trento
Biobanks as Electronic Gatekeepers of Personal Health Data: Open Issues

Matteo Macilotti, University of Trento
Reshaping Informed Consent in the Biobank Context

Question time for the entire session and preliminary conclusions

SECOND SESSION: MEDICAL AND TECHNOLOGICAL PERSPECTIVES

Giuliano D’Agnolo, Vice-President, National Committee for Biosafety - Rome with the collaboration of
Elena Bravo, Istituto Superiore di Sanità
The Italian Prototype Networks of Research Biobanks

Georges Dagher, Director for clinical research infrastructures at the French national health and medical research institute (INSERM - Paris)
The Biobanking and Biomolecular Resources Research Infrastructure (BBMRI): Coordination of European Tissues Banks

Manfred Dietel, Charité - Universitätsmedizin Berlin
Surgical Pathology Archives: Invaluable Historical Collections for Cancer Research

Giorgio Inghirami, University of Turin
Biospecimen Collection, Storage and Quality Assurance. Do We Need an European Standard?

Chairpersons:
Gianluigi Taddei, University of Firenze;
Paolo della Palma, APSS - Trento

Oscar Nappi, Cardarelli Hospital - Napoli
Biobanks and the Italian Society of Surgical Pathology

Mattia Barbareschi, Trentino Biobank, APSS - Trento
Surgical Pathology: A Powerful Source of Well Annotated Human Tissues for Cancer Research

Giorgio Stanta, University of Trieste
An Italian Network of Archival Tissues Biobanks

Barbara Parodi, National Institute for Cancer Research - Genova
Governance of Biobanks for Cancer Research: Proposal for a Material Transfer Agreement

Roberto Caso, University of Trento
Control over Biobanks’ Information: A Law and Technology Approach

Donna Gitter, Baruch College - New York City
The Challenges of Achieving Open Source Sharing of Biobank Data

Thomas Margoni, University of Western Ontario / Matteo Macilotti, University of Trento
The Role of Material Transfer Agreements in Biobanking

Richard Gold, McGill University - Montreal
Beyond Open Source: Patents, Biobanks and Sharing

Mark Perry, University of Western Ontario
Accessing Biobanks and Benefit-Sharing