9780511611087 (ebook) 9780521856621 (hardback) 9781107652576 (paperback)
Cambridge law, medicine, and ethics ; 4.
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.
Title from publisher's bibliographic system (viewed on 05 Oct 2015).
Formatted Contents Note
Introduction : some lessons of ELSAGEN / Vilhjálmur Árnason On human genetic databases / Gardar Árnason American principles, European values and the mezzanine rules of ethical genetic databanking / Matti Häyry and Tuija Takala The languages of privacy / Salvör Nordal A sociological perspective : public perceptions of privacy and their trust in institutions managing and regulating genetic databases / Kjell E. Eriksson [and others] Estonia / Külliki Korts Iceland / Margrét Lilja Gudmundsdóttir and Salvör Nordal Sweden / Kjell E. Eriksson United Kingdom / Sue Weldon Public discourses on human genetic databases / Piia Tammpuu Regulating human genetic databases in Europe / Jane Kaye Consent and population genetic databases : a comparative analysis of the law in Iceland, Sweden, Estonia and the UK / Hördur Helgi Helgason Third parties' interests in population genetic databases : some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK / Lotta Wendel Transforming principles of biolaw into national legislation : comparison of four national laws in three aspects / Ants Nõmper Governance of population genetic databases : a comparative analysis of legal regulation in Estonia, Iceland, Sweden and the UK / Susan M.C. Gibbons The legal jigsaw governing population genetic databases : concluding remarks on the ELSAGEN legal findings / Jane Kaye Introduction : ethical questions / Vilhjálmur Árnason Pursuing equality : questions of social justice and population genomics / Sarah Wilson and Ruth Chadwick Benefit-sharing and biobanks / Kadri Simm Genetic discrimination / Lena Halldenius Privacy / Salvör Nordal Trust / Margit Sutrop Informed consent and human genetic database research / Sigurdur Kristinsson and Vilhjálmur Árnason The impact of biobanks on ethical frameworks / Ruth Chadwick and Mark Cutter Genetics, rhetoric and policy / Gardar Árnason Genetic databases and governance / Rainer Kattel Bioethical analysis of the results : how well do laws and regulations address people's concerns? / Matti Häyry and Tuija Takala.