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000725341 0247_ $$a10.1007/978-94-017-9573-9$$2doi
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000725341 24500 $$aEthics, law and governance of biobanking$$h[electronic resource] :$$bnational, European and international approaches /$$cDeborah Mascalzoni, editor.
000725341 264_1 $$aDordrecht [Netherlands] :$$bSpringer,$$c2015.
000725341 300__ $$a1 online resource.
000725341 336__ $$atext$$btxt$$2rdacontent
000725341 337__ $$acomputer$$bc$$2rdamedia
000725341 338__ $$aonline resource$$bcr$$2rdacarrier
000725341 4901_ $$aThe international library of ethics, law and technology ;$$vvolume 14
000725341 5050_ $$aIntroduction; 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.
000725341 506__ $$aAccess limited to authorized users.
000725341 520__ $$aBiobank 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 medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks.Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time 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 of current society. Research ethics shouldn't only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. 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.
000725341 650_0 $$aBiobanks.
000725341 650_0 $$aBioethics.
000725341 650_0 $$aBiobanks$$xMoral and ethical aspects.
000725341 7001_ $$aMascalzoni, Deborah,$$eeditor.
000725341 77608 $$iPrint version:$$z9789401795722
000725341 830_0 $$aInternational library of ethics. law and technology ;$$vvolume 14.
000725341 852__ $$bebk
000725341 85640 $$3SpringerLink$$uhttps://univsouthin.idm.oclc.org/login?url=http://link.springer.com/10.1007/978-94-017-9573-9$$zOnline Access$$91397441.1
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000725341 983__ $$aOnline
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