Ethics, law and governance of biobanking : national, european and international approaches / edited by Deborah Mascalzoni.

Springer eBooks

Introduction; Deborah Mascalzoni -- Biobanks: a definition; Barbara Parodi -- A participatory space beyond the "autonomy versus property" dichotomy; Mariachiara Tallacchini -- Intellectual Property and Biobanks; Naomi Hawkins -- Consent, Privacy and Property in the Italian Biobanks Regulation: A Hybrid Model within EU?; Matteo Macilotti, Simone Penasa, Marta Tomasi -- Data Protection Principles and Research in the Biobanks Age; Roberto Lattanzi -- The New General Data Protection Regulation – where are we are and where might we be heading?; Jane Reichel and Anna-Sara Lind -- The Tension between Data Sharing and the Protection of Privacy in Genomics Research; Jane Kaye -- Incidental findings: the time is not yet ripe for a policy for biobanks; Jennifer Viberg, Mats G. Hansson, Sophie Langenskiöld, Pär Segerdahl -- Biobanking across borders: the challenges of harmonization; Ruth Chadwick, Heather Strange -- Governing Biobanks Through A European Infrastructure; Emmanuelle Rial-Sebbag, Anne Cambon-Thomsen -- EU governance for research and ethics in biobanks; Jane Reichel -- A Bold Experiment: Iceland’s Genomic Venture ; David Winickoff -- The Estonian Genome Center, University of Tartu; Aime Keis -- The management of the ethical aspects of a local mental diseases biobank for research purposes. An Italian experience; Corinna Porteri -- Biobank governance in Spain: From the autonomy of research ethics committees to the autonomy of lay people; Antonio Casado da Rocha -- 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; Claudio Corradetti, Gillian Bartlett -- Making researchers moral; Linus Johnsson, Stefan Eriksson, Gert Helgesson, Mats G. Hansson.

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