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The Ethics and Governance of Human Genetic Databases European Perspectives Part 1

Biobank y tế của Umea ở Thụy Điển, giải mã của ngành Y tế ˚ cơ sở dữ liệu ở Iceland, các dự án Genome tiếng Estonia và Biobank Vương quốc Anh đã lên kế hoạch để chứa dữ liệu y tế và dữ liệu di truyền từ dân số lớn. | o 14W Mríkinr aM ntwr. The Ethics and Governance of Human Genetic Databases European Perspectives Matti Hlytv. ftuth Chadakk. Vdrubi-i âmsức arđ Cứtứx Ẳfnaw The Ethics and Governance of Human Genetic Databases European Perspectives The Medical Biobank of Umea in Sweden deCODE s Health Sector Database in Iceland the Estonian Genome Project and the UK Biobank were planned to 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 analysed 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. The research presented in this book was conducted within the project Ethical Legal and Social Aspects of Human Genetic Databases A European Comparison funded by the European Commission s 5th Framework Programme QLG6-CT-2001-00062 . MATTI HAYRY is Professor of Bioethics and Philosophy of Law at the University of Manchester. RUTH CHADWICK is Distinguished Research Professor at Cardiff University. VILHJALMUR Arnason is a Professor of Philosophy and Chair of the Centre for Ethics at the University of Iceland. GARDAR ARNASON is a Research Fellow at the University of Manchester. Cambridge Law Medicine and Ethics This series of books was founded by Cambridge University Press with Alexander McCall Smith as its first editor in .