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Ethics and Governance of Human Genetic Databases European Perspectives

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ISBN-10: 0521856620

ISBN-13: 9780521856621

Edition: 2007

Authors: Matti H�yry, Ruth Chadwick, Vilhj�lmur �rnason, Gardar �rnason

List price: $144.00
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Description:

The Medical Biobank of Ume in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological…    
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Book details

List price: $144.00
Copyright year: 2007
Publisher: Cambridge University Press
Publication date: 4/19/2007
Binding: Hardcover
Pages: 296
Size: 6.50" wide x 9.25" long x 0.75" tall
Weight: 1.342
Language: English

Ruth Chadwick is Distinguished Research Professor and Director of the ESRC (Economic and Social Sciences Research Council) Centre for Economic and Social Aspects of Genomics (Cesagen), at Cardiff University, UK and Link Chair between Cardiff Law School and the School of English, Communication and Philosophy (ENCAP). Professor Chadwick has coordinated a number of projects funded by the European Commission, including the EUROSCREEN projects and co-edits the journal Bioethics and the online journal Genomics, Society and Policy. She is Chair of the Human Genome Organisation Committee on Ethics, Law and Society, and has served as a member of several policy-making and advisory bodies, including…    

List of contributors
Introduction: some lessons of ELSAGEN
Background
On human genetic databases
American principles, European values and the mezzanine rules of ethical genetic databanking
The languages of privacy
Social concerns
A sociological perspective: public perceptions of privacy and their trust in institutions managing and regulating genetic databases
Estonia
Iceland
Sweden
United Kingdom
Public discourses on human genetic databases
Legal issues
Regulating human genetic databases in Europe
Consent and population genetic databases: a comparative analysis of the law in Iceland, Sweden, Estonia and the UK
Third parties' interests in population genetic databases: some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK
Transforming principles of biolaw into national legislation: comparison of four national laws in three aspects
Governance of population genetic databases: a comparative analysis of legal regulation in Estonia, Iceland, Sweden and the UK
The legal jigsaw governing population genetic databases: concluding remarks on the ELSAGEN legal findings
Ethical questions
Introduction: ethical questions
Pursuing equality: questions of social justice and population genomics
Benefit-sharing and biobanks
Genetic discrimination
Privacy
Trust
Informed consent and human genetic database research
Political considerations
The impact of biobanks on ethical frameworks
Genetics, rhetoric and policy
Genetic databases and governance
Conclusion
Bioethical analysis of the results: how well do laws and regulations address people's concerns?
Bibliography
Index