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

Format:

Book

Contributor:

Häyry, Matti, editor.

Series:

Cambridge law, medicine, and ethics ; 4.

Cambridge law, medicine, and ethics ; 4

Language:

English

Subjects (All):

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

Human genetics.

Databases.

Physical Description:

1 online resource (xi, 283 pages) : digital, PDF file(s).

Other Title:

The Ethics & Governance of Human Genetic Databases

Place of Publication:

Cambridge : Cambridge University Press, 2007.

System Details:

text file

PDF

Summary:

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.

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.

Notes:

Title from publisher's bibliographic system (viewed on 05 Oct 2015).

Other Format:

Print version:

ISBN:

9780511611087

Access Restriction:

Restricted for use by site license.