| Description |
1 online resource |
| Contents |
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 |
| Summary |
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 |
| Analysis |
Law |
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Medicine |
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Bioinformatics |
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Public health laws |
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International IT and Media Law, Intellectual Property Law |
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Computational Biology/Bioinformatics |
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Medical Law |
| Bibliography |
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? |
| Subject |
Biobanks -- Law and legislation.
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Biology -- Research -- Law and legislation
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Cross-cultural studies.
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Medical policy.
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Intellectual property.
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Biological Specimen Banks -- legislation & jurisprudence
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Confidentiality -- legislation & jurisprudence
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Cross-Cultural Comparison
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Health Policy
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Intellectual Property
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Ownership -- legislation & jurisprudence
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intellectual property.
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LAW -- Medical Law & Legislation.
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Droit.
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Sciences sociales.
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Sciences humaines.
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Medical policy
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Intellectual property
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Cross-cultural studies
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Biobanks -- Law and legislation
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Biobank.
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Health.
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Patents.
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Technology.
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Scientific research.
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Data protection.
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Privacy.
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Intellectual property.
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Comparative law.
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| Form |
Electronic book
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| Author |
Pascuzzi, Giovanni.
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Izzo, Umberto.
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Macilotti, Matteo
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| ISBN |
9783642331169 |
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3642331165 |
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9783642331152 |
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3642331157 |
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