The ethics and governance of human genetic databases: European perspectives
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 an...
Gespeichert in:
| Weitere Verfasser: | |
|---|---|
| Format: | Elektronisch E-Book |
| Sprache: | English |
| Veröffentlicht: |
Cambridge
Cambridge University Press
2007
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| Schriftenreihe: | Cambridge law, medicine, and ethics
4 |
| Schlagworte: | |
| Online-Zugang: | DE-12 DE-92 DE-473 URL des Erstveröffentlichers |
| Zusammenfassung: | 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 |
| Beschreibung: | Title from publisher's bibliographic system (viewed on 05 Oct 2015) |
| Beschreibung: | 1 online resource (xi, 283 pages) |
| ISBN: | 9780511611087 |
| DOI: | 10.1017/CBO9780511611087 |
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| 505 | 8 | |a 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 -- | |
| 505 | 8 | |a 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 -- | |
| 505 | 8 | |a 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 | |
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| contents | 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 |
| ctrlnum | (ZDB-20-CBO)CR9780511611087 (OCoLC)967399526 (DE-599)BVBBV043920128 |
| dewey-full | 174.296042 |
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| dewey-ones | 174 - Occupational ethics |
| dewey-raw | 174.296042 |
| dewey-search | 174.296042 |
| dewey-sort | 3174.296042 |
| dewey-tens | 170 - Ethics (Moral philosophy) |
| discipline | Biologie Philosophie |
| doi_str_mv | 10.1017/CBO9780511611087 |
| format | Electronic eBook |
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| indexdate | 2024-09-24T00:22:31Z |
| institution | BVB |
| isbn | 9780511611087 |
| language | English |
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| publishDate | 2007 |
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| publisher | Cambridge University Press |
| record_format | marc |
| series2 | Cambridge law, medicine, and ethics |
| spelling | The ethics and governance of human genetic databases European perspectives edited by Matti Häyry [and others] The Ethics & Governance of Human Genetic Databases Cambridge Cambridge University Press 2007 1 online resource (xi, 283 pages) txt rdacontent c rdamedia cr rdacarrier Cambridge law, medicine, and ethics 4 Title from publisher's bibliographic system (viewed on 05 Oct 2015) 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 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 Ethik Human genetics / Databases / Moral and ethical aspects Recht (DE-588)4048737-4 gnd rswk-swf Ethik (DE-588)4015602-3 gnd rswk-swf Mensch (DE-588)4038639-9 gnd rswk-swf Genbibliothek (DE-588)4236160-6 gnd rswk-swf 1\p (DE-588)4143413-4 Aufsatzsammlung gnd-content Genbibliothek (DE-588)4236160-6 s Mensch (DE-588)4038639-9 s Recht (DE-588)4048737-4 s 2\p DE-604 Ethik (DE-588)4015602-3 s 3\p DE-604 Häyry, Matti edt Erscheint auch als Druckausgabe 978-0-521-85662-1 Erscheint auch als Druckausgabe 978-1-107-65257-6 https://doi.org/10.1017/CBO9780511611087 Verlag URL des Erstveröffentlichers Volltext 1\p cgwrk 20201028 DE-101 https://d-nb.info/provenance/plan#cgwrk 2\p cgwrk 20201028 DE-101 https://d-nb.info/provenance/plan#cgwrk 3\p cgwrk 20201028 DE-101 https://d-nb.info/provenance/plan#cgwrk |
| spellingShingle | The ethics and governance of human genetic databases European perspectives 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 Ethik Human genetics / Databases / Moral and ethical aspects Recht (DE-588)4048737-4 gnd Ethik (DE-588)4015602-3 gnd Mensch (DE-588)4038639-9 gnd Genbibliothek (DE-588)4236160-6 gnd |
| subject_GND | (DE-588)4048737-4 (DE-588)4015602-3 (DE-588)4038639-9 (DE-588)4236160-6 (DE-588)4143413-4 |
| title | The ethics and governance of human genetic databases European perspectives |
| title_alt | The Ethics & Governance of Human Genetic Databases |
| title_auth | The ethics and governance of human genetic databases European perspectives |
| title_exact_search | The ethics and governance of human genetic databases European perspectives |
| title_full | The ethics and governance of human genetic databases European perspectives edited by Matti Häyry [and others] |
| title_fullStr | The ethics and governance of human genetic databases European perspectives edited by Matti Häyry [and others] |
| title_full_unstemmed | The ethics and governance of human genetic databases European perspectives edited by Matti Häyry [and others] |
| title_short | The ethics and governance of human genetic databases |
| title_sort | the ethics and governance of human genetic databases european perspectives |
| title_sub | European perspectives |
| topic | Ethik Human genetics / Databases / Moral and ethical aspects Recht (DE-588)4048737-4 gnd Ethik (DE-588)4015602-3 gnd Mensch (DE-588)4038639-9 gnd Genbibliothek (DE-588)4236160-6 gnd |
| topic_facet | Ethik Human genetics / Databases / Moral and ethical aspects Recht Mensch Genbibliothek Aufsatzsammlung |
| url | https://doi.org/10.1017/CBO9780511611087 |
| work_keys_str_mv | AT hayrymatti theethicsandgovernanceofhumangeneticdatabaseseuropeanperspectives AT hayrymatti theethicsgovernanceofhumangeneticdatabases |