Ethics, Law and Governance of Biobanking: National, European and International Approaches

Front Matter....Pages i-viii
Ethics Law and Governance of Biobanking: A Very Complex Normative Puzzle....Pages 1-14
Biobanks: A Definition....Pages 15-19
A Participatory Space Beyond the “Autonomy Versus Property” Dichotomy....Pages 21-38
Intellectual Property and Biobanks....Pages 39-51
Consent, Privacy and Property in the Italian Biobanks Regulation: A Hybrid Model Within EU?....Pages 53-77
Data Protection Principles and Research in the Biobanks Age....Pages 79-93
The New General Data Protection Regulation—Where Are We Are and Where Might We Be Heading?....Pages 95-100
The Tension Between Data Sharing and the Protection of Privacy in Genomics Research....Pages 101-120
Incidental Findings: The Time Is not yet Ripe for a Policy for Biobanks....Pages 121-131
Biobanking Across Borders: The Challenges of Harmonisation....Pages 133-138
Governing Biobanks Through a European Infrastructure....Pages 139-151
EU Governance for Research and Ethics in Biobanks....Pages 153-185
A Bold Experiment: Iceland’s Genomic Venture....Pages 187-209
The Estonian Genome Center, University of Tartu....Pages 211-218
Management of the Ethical Aspects of a Local Mental Diseases Biobank for Research Purposes: The Italian Experience....Pages 219-225
Biobank Governance in Spain: From the Autonomy of Research Ethics Committees to the Autonomy of Lay People....Pages 227-239
Public Deliberation and the Role of Stakeholders as a New Frontier in the Governance of Science: The British Columbia Biobank Deliberation and the DePGx Project....Pages 241-260
Making Researchers Moral....Pages 261-277