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Comparative issues in the governance of research biobanks : property, privacy, intellectual property, and the role of technology / Giovanni Pascuzzi, Umberto Izzo, Matteo Macilotti, editors



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Titolo: Comparative issues in the governance of research biobanks : property, privacy, intellectual property, and the role of technology / Giovanni Pascuzzi, Umberto Izzo, Matteo Macilotti, editors
Link to work: Comparative issues in the governance of research biobanks Visualizza cluster
Pubblicazione: Berlin ; New York : Springer, ©2013
Estensione: 1 online resource
Tipo formato: computer
Tipo contenuto: text
Tipo supporto: online resource
Disciplina: 344.04/196
Genere/Forma: Electronic books
Index term-Uncontrolled: Law.
Medicine
Bioinformatics
Public health laws
International IT and Media Law, Intellectual Property Law.
Computational Biology/Bioinformatics
Medical Law.
Soggetto non controllato: Law.
Medicine
Bioinformatics
Public health laws
International IT and Media Law, Intellectual Property Law.
Computational Biology/Bioinformatics
Medical Law.
Termine d'indicizzazione-Occupazione: Law.
Medicine
Bioinformatics
Public health laws
International IT and Media Law, Intellectual Property Law.
Computational Biology/Bioinformatics
Medical Law.
Classificazione LOC: K3611.H86 C66 2013
Creatori/Collaboratori: Pascuzzi, Giovanni
Izzo, Umberto
Macilotti, Matteo
Contenuto supplementare: ReferencesChapter 7: Should Privacy Be Abolished in Genetics and Biobanking?; 7.1 Individual Privacy and Family Ties in Genetics and Biobanking; 7.2 Current Main Features in Biobanking and Privacy; 7.2.1 Definitions; 7.2.2 Interconnection of Biobanks, Confidentiality and Access; 7.2.3 Privacy Without Boundaries; 7.2.4 Disenchantment on Privacy and Informed Consent; 7.3 The Real Interests at Stake; 7.3.1 Family and Humanity: Is the Human Genome Really Human? What Family?; 7.3.2 Where Should We Draw the Boundary Line? Biology; 7.3.3 Where Should We Draw the Boundary Line?
Nota di contenuto: Property and Privacy in Biobanking -- Research Biobanks Meet Synthetic Biology: Autonomy and Ownership / Stephen R. Munzer -- Regulating Biobanks: Another Triple Bottom Line / Roger Brownsword -- Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States / Eric A. Feldman, Chelsea Darnell -- Ownership of Biomedical Information in Biobanks / Naomi Hawkins, Nadja Kanellopoulou, Jane Kaye, Karen Melham, Paula Boddington -- Human Tissues in the "Public Space": Beyond the Property/Privacy Dichotomy / Mariachiara Tallacchini -- Should Privacy Be Abolished in Genetics and Biobanking? / Amedeo Santosuosso -- Biobanks and Electronic Health Records: Open Issues / Paolo Guarda -- Informed Consent and Research Biobanks: A Challenge in Three Dimensions / Matteo Macilotti -- Intellectual Property and Biobanks -- The Challenges of Achieving Open Source Sharing of Biobank Data / Donna M. Gitter -- Beyond Open Source: Patents, Biobanks and Sharing / E. Richard Gold, Dianne Nicol -- Opening Research Biobanks: An Overview / Roberto Caso, Rossana Ducato -- The Roles of Material Transfer Agreements in Genetics Databases and Bio-Banks / Thomas Margoni -- Quasi-Patents and Semi-Patents in Biobanking / Gideon Parchomovsky, Michael Mattioli -- Accessing Accessions: Biobanks and Benefit-Sharing / Mark Perry -- Conveying Information, Generating Trust: The Role of Certifications in Biobanking / Matteo Ferrari -- Biobanks: The Perspective of Biobanker's -- Scientific and Managerial Premises and Unresolved Issues in Tumour Biobanking Activities / Mattia Barbareschi, Silvia Fasanella, Chiara Cantaloni, Silvia Giuliani -- The Italian Prototype Networks of Research Biobanks / Giuliano D'Agnolo, Elena Bravo -- Governance of Biobanks for Cancer Research: Proposal for a Material Transfer Agreement / Barbara Parodi, Paola Visconti, Tiziana Ruzzon, Mauro Truini.
Restrizioni accesso: Access is restricted to users affiliated with licensed institutions.
Sommario/riassunto: In the last few years, the boom in biobanking has prompted a lively debate on a host of interrelated legal issues, such as the Gordian knot of the ownership of biological materials, as well as privacy concerns. The latter are due to the difficulty of accepting that biological samples must be completely anonymous without making it practically impossible to exploit their information potential. The issues also include the delicate role and the changing content of the donor's "informed consent" as the main legal tool that may serve to link the privacy and property interests of donors with the rese.
ISBN: 9783642331169
3642331165
9783642331152
3642331157
9781299336704
1299336701
Formato: Materiale a stampa
Livello bibliografico Monografia
Lingua di pubblicazione: Inglese
Record Nr.: 004626732
Localizzazioni e accesso elettronico https://ebookcentral.proquest.com/lib/nyulibrary-ebooks/detail.action?docID=1082651
Collocazione: Electronic access
Lo trovi qui: New York University
Altra ed. diverso supporto: Print version: 9781299336704