Ethics, law and governance of biobanking: national, European and international approaches
Saved in:
| Format: | Book |
|---|---|
| Language: | English |
| Published: |
Dordrecht [u.a.]
Springer
2015
|
| Series: | The international library of ethics, law and technology
14 |
| Subjects: | |
| Online Access: | Inhaltsverzeichnis Klappentext |
| Physical Description: | VIII, 277 S. |
| ISBN: | 9789401795722 |
Staff View
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Record in the Search Index
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Contents
Ethics Law and Governance of
Biobanking:
A Very Complex
Normative Puzzle
. 1
Deborah
Mascalzoni
Biobanks: A Definition
. 15
Barbara
Parodi
A Participatory Space Beyond the "Autonomy Versus
Property" Dichotomy
. 21
Mariachiara Tallacchini
Intellectual Property and Biobanks
. 39
Naomi Hawkins
Consent, Privacy and Property in the Italian Biobanks
Regulation: A Hybrid Model Within
EU?. 53
Matteo Macilotti,
Simone Penasa
and
Marta Tornasi
Data Protection Principles and Research in the Biobanks Age
. 79
Roberto Lattanzi
The New General Data Protection Regulation
—
Where Are
We Are and Where Might We Be Heading?
. 95
Jane Reichel and
Anna-Sara Lind
The Tension Between Data Sharing and the Protection
of Privacy in Genomics Research
. 101
Jane Kaye
viii Contents
Incidental
Findings: The Time Is not yet Ripe for a Policy
for Biobanks
. 121
Jennifer Viberg, Mats
G. Hansson,
Sophie
Langenskiöld
and
Pär Segerdahl
Biobanking
Across Borders: The Challenges of
Harmonisation
. 133
Ruth Chadwick and Heather Strange
Governing Biobanks Through a European Infrastructure
. 139
Emmanuelle
Rial-Sebbag and Anne Cambon-Thomsen
EU
Governance for Research and Ethics in Biobanks
. 153
Jane Reichel
A Bold Experiment: Iceland's Genomic Venture
. 187
David Winickoff
і
The Estonian Genome Center, University of Tartu
. 211
Aime
Kei
s
Management of the Ethical Aspects of a Local Mental
Diseases Biobank for Research Purposes: The Italian Experience
. 219
Corinna Porten
Biobank Governance in Spain: From the Autonomy
of Research Ethics Committees to the Autonomy of Lay People
. 227
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
. 241
Claudio Corradetti
and Gillian Bartlett
Making Researchers Moral
. 261
Linus
Johnsson,
Stefan Eriksson,
Gert Helgesson
and Mats
G. Hansson
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valuefor patients. Clinical applications and research
haveren
bpt separate,
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blurring lines challenges existing regulations and ethical frameworks. Hen how do
we regulate it?
μ
This book contains an overview of the existing regulatoit J^ascape for biobank
ethical frameworks are developed and work How should international sharing work?
iiowdesipmethi^
!
if
An underlying critique: the regulatory systems are becoming increasingly complex
to that According to the authors in fact, it is tink to turn the ship around. Biobank
researchers have a moral responsibility to look at and assess their work in relation to
the bigger picture: the shared norms and values or current society. Research ethics
follow. Ethics should be practiced through discourse and regulatory frameworks need
to be part of thatpiihhc discourse. Ethics review should be then not merely application
of bureaucracy and a burden for researchers but an arena where researcher« discuss
their projects, receive advice and practice their ethics skills. |
| any_adam_object | 1 |
| author_GND | (DE-588)1071342126 |
| building | Verbundindex |
| bvnumber | BV042322369 |
| classification_rvk | CC 7264 PJ 2380 |
| ctrlnum | (OCoLC)903810573 (DE-599)BVBBV042322369 |
| discipline | Rechtswissenschaft Philosophie |
| format | Book |
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| illustrated | Not Illustrated |
| indexdate | 2024-09-24T00:22:03Z |
| institution | BVB |
| isbn | 9789401795722 |
| language | English |
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| physical | VIII, 277 S. |
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| series | The international library of ethics, law and technology |
| series2 | The international library of ethics, law and technology |
| spelling | Ethics, law and governance of biobanking national, European and international approaches Deborah Mascalzoni ed. Dordrecht [u.a.] Springer 2015 VIII, 277 S. txt rdacontent n rdamedia nc rdacarrier The international library of ethics, law and technology 14 Recht (DE-588)4048737-4 gnd rswk-swf Medizinische Ethik (DE-588)4074672-0 gnd rswk-swf Biomedizin (DE-588)4647152-2 gnd rswk-swf Biobank (DE-588)7517760-2 gnd rswk-swf (DE-588)4143413-4 Aufsatzsammlung gnd-content Biobank (DE-588)7517760-2 s Biomedizin (DE-588)4647152-2 s Medizinische Ethik (DE-588)4074672-0 s Recht (DE-588)4048737-4 s DE-604 Mascalzoni, Deborah Sonstige (DE-588)1071342126 oth Erscheint auch als Online-Ausgabe 978-94-017-9573-9 The international library of ethics, law and technology 14 (DE-604)BV035051553 14 Digitalisierung UB Augsburg - ADAM Catalogue Enrichment application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=027759264&sequence=000003&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis Digitalisierung UB Augsburg - ADAM Catalogue Enrichment application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=027759264&sequence=000004&line_number=0002&func_code=DB_RECORDS&service_type=MEDIA Klappentext |
| spellingShingle | Ethics, law and governance of biobanking national, European and international approaches The international library of ethics, law and technology Recht (DE-588)4048737-4 gnd Medizinische Ethik (DE-588)4074672-0 gnd Biomedizin (DE-588)4647152-2 gnd Biobank (DE-588)7517760-2 gnd |
| subject_GND | (DE-588)4048737-4 (DE-588)4074672-0 (DE-588)4647152-2 (DE-588)7517760-2 (DE-588)4143413-4 |
| title | Ethics, law and governance of biobanking national, European and international approaches |
| title_auth | Ethics, law and governance of biobanking national, European and international approaches |
| title_exact_search | Ethics, law and governance of biobanking national, European and international approaches |
| title_full | Ethics, law and governance of biobanking national, European and international approaches Deborah Mascalzoni ed. |
| title_fullStr | Ethics, law and governance of biobanking national, European and international approaches Deborah Mascalzoni ed. |
| title_full_unstemmed | Ethics, law and governance of biobanking national, European and international approaches Deborah Mascalzoni ed. |
| title_short | Ethics, law and governance of biobanking |
| title_sort | ethics law and governance of biobanking national european and international approaches |
| title_sub | national, European and international approaches |
| topic | Recht (DE-588)4048737-4 gnd Medizinische Ethik (DE-588)4074672-0 gnd Biomedizin (DE-588)4647152-2 gnd Biobank (DE-588)7517760-2 gnd |
| topic_facet | Recht Medizinische Ethik Biomedizin Biobank Aufsatzsammlung |
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