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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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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 developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analyzed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases.
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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

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 the Panel of Eminent Ethical Experts of the Food and Agriculture Organisation of the United Nations (FAO), and the UK Advisory Committee on Novel Foods and Processes (ACNFP). She was editor-in-chief of the first edition of the award winning Encyclopedia of Applied Ethics. She is an Academician of the Academy of Social Sciences and a Fellow of the Hastings Center, New York; of the Royal Society of Arts; and of the Royal Society of Medicine. In 2005 she was the winner of the World Technology Network Award for Ethics for her work on the relationship between scientific developments and ethical frameworks. She graduated with first class Honours Literae Humaniores (Philosophy and Greek and Latin Literature) from the University of Oxford, and then went on to take the B.Phil. in Philosophy. She was awarded her D.Phil. on The Ethics of Eugenics and Genetic Engineering, supervised by Jonathan Glover. She completed an LL.B. (externally) at the University of London. She held positions at the University of Liverpool, St. Martins College, Lancaster, and University of Wales, Cardiff, before taking up her post as Professor of Moral Philosophy at the University of Central Lancashire. In June 1995 she became Head of the Centre for Professional Ethics at the University, a position she still holds. She has coordinated a number of multinational and multidisciplinary research projects funded by the European Union: Ethical Implications of Human Genome Analysis for Clinical Practice in Medical Genetics, with Special Reference to Genetic Counselling (1992); EUROSCREEN: Genetic Screening--Ethical and Philosophical Perspectives (1994-1996); BIOCULT: Cultural and Social Objections to Biotechnology, with Special Reference to the View of Young People (1995); EUROSCREEN 2: Genetic Screening--Towards Community Policy on Insurance, Commercialisation and Public Awareness (1996-1999). Her publications include the four volume edited collection, Kant: Critical Assessments (1992); Ethics, Reproduction and Genetic Control (Revised Edition, 1992);and a large number of papers in learned journals. She is joint series editor of the Routledge series on Professional Ethics. Professor Chadwick is secretary of the International Association of Bioethics and a member of the HUGO Ethics committee, the National Committee for Philosophy and the British Medical Association Steering Group on Human Genetics.

List of contributors
Introduction: some lessons of ELSAGEN
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
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
Informed consent and human genetic database research
Political considerations
The impact of biobanks on ethical frameworks
Genetics, rhetoric and policy
Genetic databases and governance
Bioethical analysis of the results: how well do laws and regulations address people's concerns?