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Paperback The Ethics and Governance of Human Genetic Databases: European Perspectives Book

ISBN: 110765257X

ISBN13: 9781107652576

The Ethics and Governance of Human Genetic Databases: European Perspectives

(Part of the Cambridge Law, Medicine and Ethics Series)

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Book Overview

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, first published in 2007, 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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