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The Ethics and Governance of Human Genetic Databases

The Ethics and Governance of Human Genetic Databases : European Perspectives. 人間の遺伝子データベースの倫理と管理-欧州の視点

・ISBN 978-0-521-85662-1 hard GB£ 105.00

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電子版あり 大学・学術機関向け電子ブック(eBook)ISBN 978-0-511-61108-7

著者・編者Häyry, Matti / Chadwick, R. / Árnason, V. et al.,
シリーズCambridge Law, Medicine and Ethics
出版社(Cambridge U. Pr., UK)
出版年月2007
ページ数283 pp.
言語ENG
ニュース番号<537-743>

解説

The Medical Biobank of Umea 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.