The Ethics and Governance of Human Genetic Databases: European Perspectives

by Matti Häyry , Ruth Chadwick , Vilhjálmur Árnason , Gardar Árnason

• ISBN13: 9780521856621
• ISBN10: 0521856620
• Edition: 1st
• Format: Hardcover
• Copyright: 2007-05-28
• Publisher: Cambridge University Press

Summary

The Medical Biobank of Umey 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 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.

Table of Contents

List of contributors	p. X
Introduction: some lessons of ELSAGEN	p. 1
Background	p. 9
On human genetic databases	p. 11
American principles, European values and the mezzanine rules of ethical genetic databanking	p. 14
The languages of privacy	p. 37
Social concerns	p. 43
A sociological perspective: public perceptions of privacy and their trust in institutions managing and regulating genetic databases	p. 45
Estonia	p. 47
Iceland	p. 53
Sweden	p. 59
United Kingdom	p. 66
Public discourses on human genetic databases	p. 73
Legal issues	p. 89
Regulating human genetic databases in Europe	p. 91
Consent and population genetic databases: a comparative analysis of the law in Iceland, Sweden, Estonia and the UK	p. 97
Third parties' interests in population genetic databases: some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK	p. 108
Transforming principles of biolaw into national legislation: comparison of four national laws in three aspects	p. 120
Governance of population genetic databases: a comparative analysis of legal regulation in Estonia, Iceland, Sweden and the UK	p. 132
The legal jigsaw governing population genetic databases: concluding remarks on the ELSAGEN legal findings	p. 141
Ethical questions	p. 147
Introduction: ethical questions	p. 149
Pursuing equality: questions of social justice and population genomics	p. 150
Benefit-sharing and biobanks	p. 159
Genetic discrimination	p. 170
Privacy	p. 181
Trust	p. 190
Informed consent and human genetic database research	p. 199
Political considerations	p. 217
The impact of biobanks on ethical frameworks	p. 219
Genetics, rhetoric and policy	p. 227
Genetic databases and governance	p. 236
Conclusion	p. 247
Bioethical analysis of the results: how well do laws and regulations address people's concerns?	p. 249
Bibliography	p. 257
Index	p. 276
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