The ethics and governance of human genetic databases : European perspectives / edited by Matti Häyry ... [and others].

Format:

Book

Contributor:

Häyry, Matti.

Series:

Cambridge law, medicine, and ethics

Language:

English

Subjects (All):

Human genetics--Databases--Moral and ethical aspects.

Human genetics.

Biological Specimen Banks--ethics.

Databases.

Europe.

Databases, Genetic--ethics.

Genetic Privacy.

Genetics, Medical--ethics.

Medical Subjects:

Biological Specimen Banks--ethics.

Europe.

Databases, Genetic--ethics.

Genetic Privacy.

Genetics, Medical--ethics.

Physical Description:

xi, 283 pages : illustrations ; 24 cm.

Place of Publication:

Cambridge ; New York : Cambridge University Press, 2007.

Summary:

The Medical Biobank of Umea 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, 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.

Contents:

1 Introduction: some lessons of ELSAGEN / Vilhjalmur Arnason 1

2 On human genetic databases / Gardar Arnason 11

3 American principles, European values and the mezzanine rules of ethical genetic databanking / Matti Hayry, 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, Margret Lilja Gudmundsdottir, Kulliki Korts, Sue Weldon 45

6 Estonia / Kulliki Korts 47

7 Iceland / Margret Lilja Gudmundsdottir, 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

Part IV Ethical questions 147

17 Introduction: ethical questions / Vilhjalmur Arnason 149

18 Pursuing equality: questions of social justice and population genomics / Sarah Wilson, 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, Vilhjalmur Arnason 199

Part V Political considerations 217

24 The impact of biobanks on ethical frameworks / Ruth Chadwick, Mark Cutter 219

25 Genetics, rhetoric and policy / Gardar Arnason 227

26 Genetic databases and governance / Rainer Kattel 236

27 Bioethical analysis of the results: how well do laws and regulations address people's concerns? / Matti Hayry, Tuija Takala 249.

Notes:

Includes bibliographical references (pages 257-275) and index.

ISBN:

0521856620

9780521856621

OCLC:

74523237