The Ethics and Governance of Human Genetic Databases: European PerspectivesCambridge University Press, 2007年4月19日 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, 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. |
常見字詞
24 February accessed on 24 Autonomy Benefit-Sharing Biobanks Blood and Data Brussels Cambridge Quarterly Cambridge University Press Cloning Council of Europe Council on Bioethics Drechsler Estonian Genome Project Ethics and Biotechnology European Commission Framework Gene Mapping Genetic Information Genetic Privacy Genetic Research Genetic Secrets Genetics and Society Gesellschaft und Staat Harvard University Press Häyry and Takala Health Sector Database Healthcare Ethics 13 Human Genetics Commission Human Genome Project Human Genomic Databases Human Rights Icelandic Parliament Informed Consent Journal of Medical Knoppers Lög London Medical Association Declaration Medical Ethics Nature Reviews Genetics Nõmper Nordal and Árnason Örebro County Oxford University Press Parliament Criminal Justice Policy Population Genetic Databases Populations and Genetics Postimees President’s Council Principles Quarterly of Healthcare Research Involving Human Rössler Rothstein Science and Technology Scratching the Surface Special Eurobarometer Surface of Bioethics Sweden Swedish Parliament Trames UK Parliament Criminal Wellcome Trust World Medical Association York