Ethics, Law and Governance of Biobanking

Ethics, Law and Governance of Biobanking

National, European and International Approaches

Mascalzoni, Deborah

Springer

10/2016

277

Mole

Inglês

9789402405217

15 a 20 dias

Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.
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 Langenskioeld, Par 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.
Este título pertence ao(s) assunto(s) indicados(s). Para ver outros títulos clique no assunto desejado.