Ethics, Law and Governance of Biobanking National, European and International Approaches /
Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medica...
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| Language: | English |
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Dordrecht :
Springer Netherlands : Imprint: Springer,
2015.
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| Edition: | 1st ed. 2015. |
| Series: | The International Library of Ethics, Law and Technology,
14 |
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| Online Access: | https://doi.org/10.1007/978-94-017-9573-9 |
Table of Contents:
- 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.