The Medical Biobank of Umeå 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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"...Rarely does a book comprise so many large and growing legal questions. THE ETHICS AND GOVERNANCE OF HUMAN DATABASES is a very worthy book which addresses issues that are opening up everyday - sometimes under our feet."
--Ricardo Chueca, Department of Law, University of La Rioja, Spain, The Law and Politics Book Review
--Ricardo Chueca, Department of Law, University of La Rioja, Spain, The Law and Politics Book Review
Book Description
Human genetic databases raise many ethical, legal and social questions. A group of bioethics scholars examine whether existing ethical frameworks and social policies adequately reflect people's concerns, and how these frameworks and policies may need to change in light of new scientific and technological developments.
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Key Phrases - Statistically Improbable Phrases (SIPs):
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mezzanine rules, population genetic databases, human genetic databases, health sector database, human genomic databases, clinical genetic databases, genetic database project, population biobanks, science ethics committees, chief processor, genetic databanks, genuine informed consent, irrational mistrust, national gene bank, genetic exceptionalism, open consent, decisional privacy, data protection authority, authentic trust, gene donors, informational privacy, trustworthy institutions, human genetic information, genetic discrimination, human genetic research Key Phrases - Capitalized Phrases (CAPs): (learn more)
European Commission, New York, United Kingdom, Matti Häyry, Cambridge University Press, Supreme Court, Oxford University Press, Human Genes Research Act, Human Genetics Commission, Human Tissue Act, Icelandic Parliament, Medical Research Council, Onora O'Neill, Universal Declaration, Jane Kaye, Cambridge Quarterly of Healthcare Ethics, Estonian Nokia, Swedish Parliament, Department of Health, Immanuel Kant, Medical Care Act, Anita Allen, Estonian Parliament, Ethical Review Act, European Union New!
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mezzanine rules, population genetic databases, human genetic databases, health sector database, human genomic databases, clinical genetic databases, genetic database project, population biobanks, science ethics committees, chief processor, genetic databanks, genuine informed consent, irrational mistrust, national gene bank, genetic exceptionalism, open consent, decisional privacy, data protection authority, authentic trust, gene donors, informational privacy, trustworthy institutions, human genetic information, genetic discrimination, human genetic research Key Phrases - Capitalized Phrases (CAPs): (learn more)
European Commission, New York, United Kingdom, Matti Häyry, Cambridge University Press, Supreme Court, Oxford University Press, Human Genes Research Act, Human Genetics Commission, Human Tissue Act, Icelandic Parliament, Medical Research Council, Onora O'Neill, Universal Declaration, Jane Kaye, Cambridge Quarterly of Healthcare Ethics, Estonian Nokia, Swedish Parliament, Department of Health, Immanuel Kant, Medical Care Act, Anita Allen, Estonian Parliament, Ethical Review Act, European Union New!
Books on Related Topics | Concordance | Text Stats Browse Sample Pages:
Front Cover | Table of Contents | First Pages | Index | Surprise Me!
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