The ethics and governance of human genetic databases: European perspectives
Gespeichert in:
| Format: | Buch |
|---|---|
| Sprache: | English |
| Veröffentlicht: |
Cambridge [u.a.]
Cambridge Univ. Press
2007
|
| Ausgabe: | 1. publ. |
| Schriftenreihe: | Cambridge law, medicine and ethics
|
| Schlagworte: | |
| Online-Zugang: | Inhaltsverzeichnis |
| Beschreibung: | Hier auch später erschienene, unveränderte Nachdrucke |
| Beschreibung: | XI, 283 S. |
| ISBN: | 9780521856621 9781107652576 |
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Datensatz im Suchindex
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Contents
List of contributors page x
1 Introduction: some lessons of ELSAGEN
vilhjAlmur arnason 1
Part I Background 9
2 On human genetic databases
gardar Arnason 11
3 American principles, European values and the
mezzanine rules of ethical genetic databanking
MATTI HAYRY AND TUIJA TAKALA 14
4 The languages of privacy
SALVOR NORDAL 37
Part II Social concerns , 43
5 A sociological perspective: public perceptions of
privacy and their trust in institutions managing
and regulating genetic databases
KJELL E. ERIKSSON, MAR.GRET LILJA
GUDMUNDSDOtTl'R, KULLIKI KORTS
AND SUE WELDON 45
6 Estonia
KULLIKI KORTS 47
vii
viii Contents
7 Iceland
MARGRET LILJA GUDMUNDSDOTTIR AND SALVOR
NORDAL 53
8 Sweden
KJELL E. ERIKSSON 59
9 United Kingdom
SUE WELDON 66
10 Public discourses on human genetic databases
piia tammpuu 73
Part III Legal issues 89
11 Regulating human genetic databases in Europe
JANE KAYE 91
12 Consent and population genetic databases: a
comparative analysis of the law in Iceland,
Sweden, Estonia and the UK
HORDUR HELGI HELGASON 97
13 Third parties' interests in population genetic
databases: some comparative notes regarding the
law in Estonia, Iceland, Sweden and the UK
LOTTA WENDEL 108
14 Transforming principles of biolaw into national
legislation: comparison of four national laws
in three aspects
ANTS NOMPER 120
15 Governance of population genetic databases: a
comparative analysis of legal regulation in Estonia,
Iceland, Sweden and the UK
SUSAN M. C. GIBBONS 132
16 The legal jigsaw governing population genetic
databases: concluding remarks on the ELSAGEN legal
findings
JANE KAYE 141
Contents ix
Part IV Ethical questions 147
17 Introduction: ethical questions
vilhjAlmur Arnason 149
18 Pursuing equality: questions of social justice and
population genomics
SARAH WILSON AND RUTH CHADWICK 150
19 Benefit sharing and biobanks
KADRI SIMM 159
20 Genetic discrimination
LENA HALLDENIUS 170
21 Privacy
SALVOR NORDAL 181
22 Trust
MARGIT SUTROP 190
23 Informed consent and human genetic database
research
sigurdur kristinsson and vilhjalmur
Arnason 199
Part V Political considerations 217
24 The impact of biobanks on ethical frameworks
RUTH CHADWICK AND MARK CUTTER 219
25 Genetics, rhetoric and policy
gardar Arnason 227
26 Genetic databases and governance
RAINER KATTEL 236
Part VI Conclusion 247
27 Bioethical analysis of the results: how well do laws and
regulations address people's concerns?
matti hAyry and tuija takala 249
Bibliography 257
Index 276 |
| adam_txt |
Contents
List of contributors page x
1 Introduction: some lessons of ELSAGEN
vilhjAlmur arnason 1
Part I Background 9
2 On human genetic databases
gardar Arnason 11
3 American principles, European values and the
mezzanine rules of ethical genetic databanking
MATTI HAYRY AND TUIJA TAKALA 14
4 The languages of privacy
SALVOR NORDAL 37
Part II Social concerns , 43
5 A sociological perspective: public perceptions of
privacy and their trust in institutions managing
and regulating genetic databases
KJELL E. ERIKSSON, MAR.GRET LILJA
GUDMUNDSDOtTl'R, KULLIKI KORTS
AND SUE WELDON 45
6 Estonia
KULLIKI KORTS 47
vii
viii Contents
7 Iceland
MARGRET LILJA GUDMUNDSDOTTIR AND SALVOR
NORDAL 53
8 Sweden
KJELL E. ERIKSSON 59
9 United Kingdom
SUE WELDON 66
10 Public discourses on human genetic databases
piia tammpuu 73
Part III Legal issues 89
11 Regulating human genetic databases in Europe
JANE KAYE 91
12 Consent and population genetic databases: a
comparative analysis of the law in Iceland,
Sweden, Estonia and the UK
HORDUR HELGI HELGASON 97
13 Third parties' interests in population genetic
databases: some comparative notes regarding the
law in Estonia, Iceland, Sweden and the UK
LOTTA WENDEL 108
14 Transforming principles of biolaw into national
legislation: comparison of four national laws
in three aspects
ANTS NOMPER 120
15 Governance of population genetic databases: a
comparative analysis of legal regulation in Estonia,
Iceland, Sweden and the UK
SUSAN M. C. GIBBONS 132
16 The legal jigsaw governing population genetic
databases: concluding remarks on the ELSAGEN legal
findings
JANE KAYE 141
Contents ix
Part IV Ethical questions 147
17 Introduction: ethical questions
vilhjAlmur Arnason 149
18 Pursuing equality: questions of social justice and
population genomics
SARAH WILSON AND RUTH CHADWICK 150
19 Benefit sharing and biobanks
KADRI SIMM 159
20 Genetic discrimination
LENA HALLDENIUS 170
21 Privacy
SALVOR NORDAL 181
22 Trust
MARGIT SUTROP 190
23 Informed consent and human genetic database
research
sigurdur kristinsson and vilhjalmur
Arnason 199
Part V Political considerations 217
24 The impact of biobanks on ethical frameworks
RUTH CHADWICK AND MARK CUTTER 219
25 Genetics, rhetoric and policy
gardar Arnason 227
26 Genetic databases and governance
RAINER KATTEL 236
Part VI Conclusion 247
27 Bioethical analysis of the results: how well do laws and
regulations address people's concerns?
matti hAyry and tuija takala 249
Bibliography 257
Index 276 |
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| spelling | The ethics and governance of human genetic databases European perspectives ed. by Matti Häyry ... 1. publ. Cambridge [u.a.] Cambridge Univ. Press 2007 XI, 283 S. txt rdacontent n rdamedia nc rdacarrier Cambridge law, medicine and ethics Hier auch später erschienene, unveränderte Nachdrucke Génétique humaine - Aspect moral ram Génétique humaine - Bases de données - Aspect moral Génétique humaine - Bases de données - Europe ram 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 (DE-588)4143413-4 Aufsatzsammlung gnd-content Genbibliothek (DE-588)4236160-6 s Mensch (DE-588)4038639-9 s Ethik (DE-588)4015602-3 s DE-604 Recht (DE-588)4048737-4 s Häyry, Matti 1956- Sonstige (DE-588)133867234 oth HBZ Datenaustausch application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=015750051&sequence=000002&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | The ethics and governance of human genetic databases European perspectives Génétique humaine - Aspect moral ram Génétique humaine - Bases de données - Aspect moral Génétique humaine - Bases de données - Europe ram 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_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_exact_search_txtP | The ethics and governance of human genetic databases European perspectives |
| title_full | The ethics and governance of human genetic databases European perspectives ed. by Matti Häyry ... |
| title_fullStr | The ethics and governance of human genetic databases European perspectives ed. by Matti Häyry ... |
| title_full_unstemmed | The ethics and governance of human genetic databases European perspectives ed. by Matti Häyry ... |
| 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 | Génétique humaine - Aspect moral ram Génétique humaine - Bases de données - Aspect moral Génétique humaine - Bases de données - Europe ram 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 | Génétique humaine - Aspect moral Génétique humaine - Bases de données - Aspect moral Génétique humaine - Bases de données - Europe Ethik Human genetics Databases Moral and ethical aspects Recht Mensch Genbibliothek Aufsatzsammlung |
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