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9789979545934

Blood and Data : Ethical, Legal, and Social Aspects of Human Genetic Databases

by ; ;
  • ISBN13:

    9789979545934

  • ISBN10:

    9979545933

  • Format: Paperback
  • Copyright: 2004-01-31
  • Publisher: David Brown Book Co

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Summary

This book presents a wide variety of viewpints on issues related to genetic databases and biobanks. The authors show that there is a lively ongoing debate on ethical and legal issues concerning, for example, privacy, autonomy, consent, social justice, benefit-sharing and genetics and databases gets a special attention, with analyses of media discourses as well as public views and perceptions. The 43 papers in "Blood and Data were contributed to the International ELSAGEN Conference on Ethical, Legal and Social Aspects of Human Genetic Databases, held in Reykjavik, Iceland, on August 25-28, 2004.

Table of Contents

List of Contributors
9(4)
Preface 13(4)
BIOETHICS, BIOTECHNOLOGY, BIOSOCIALITY
Microfluidic platforms, genetic databases, and biosociality
17(6)
Michael D. Mehta
Jennifer D. Poudrier
Privacy, property, and social relations in bioinformatics research
23(6)
Anne Gatensby
``Interbreeding within the Icelandic population is high compared with that of mice or fruit-flies''
29(10)
Gardar Arnason
GENETICS IN ASIA
Socio-genetic marginalization in Asia. A plea for a comparative approach to the relationship between genomics, governance, and social-genetic identity
39(6)
Margaret Sleeboom
A study on the ethical, legal, and social aspects of the Chinese genetic database in Taiwan
45(6)
Wan-Chiung Cheng
Wan-Ping Li
The Singapore human polymorphism/mutation database: Our experience with setting up a country-specific database
51(16)
Ene-Choo Tan
Marie Loh
CONSENT IN MEDICAL RESEARCH
The controversy on consent in the Icelandic database case and narrow bioethics
67(12)
Sigridur Thorgeirsdottir
Toward a tiered approach to consent in biomedical research
79(6)
Peter Lucas
The wolf in sheep's clothing: Informed consent forms as commercial contracts
85(10)
Gerard Porter
Gift or duty? A normative discussion for participation in human genetic databases research
95(8)
Nadja K. Kanellopoulou
CONSENT, BIOBANKS, AND GENETIC DATABASES
Broad consent --- the only option for population genetic databases?
103(8)
Jane Kaye
Databases and informed consent: Can broad consent legitimate research?
111(10)
Sigurdur Kristinsson
What is wrong with using anonymized data and tissue for research purposes?
121(6)
Ants Nomper
Informed consent for donating biosamples in medical research --- legal requirements in Iceland
127(8)
Hordur Helgi Helgason
Why we should not relax ethical rules in the age of genetics
135(8)
Tuija Takala
THE PUBLIC DISCOURSE ON GENETICS AND DATABASES
Long-term trends in public sensitivities about genetic identification: 1973--2002
143(18)
Martin W. Bauer
Making genes commonly meaningful: Implications of national self-images on human genetic databases
161(6)
Piia Tammpuu
Analyzing multiple discourses in the establishment of genetic databases
167(8)
Wendy Marsden
Genetic databases and public trust
175(6)
Mairi Levitt
Sue Weldon
``Public databases and privat(ized) property?'' A UK study of public perceptions of privacy in relation to population based human genetic databases
181(6)
Sue Weldon
Mairi Levitt
Becoming masters of our genes: Public acceptance of the Estonian Genome Project
187(6)
Kulliki Korts
``We don't have that many secrets'' --- the lay perspective on privacy and genetic data
193(8)
Anna Birna Almarsdottir
Janine Morgall Traulsen
Ingunn Bjornsdottir
Do regulations address concerns?
201(10)
Matti Hayry
VALUES, KNOWLEDGE, AND DIGNITY
Interests, values, and genetic databases
211(6)
Ann Bruce
Joyce Tait
Genetic databases and what the rat won't do: What is dignity at law?
217(6)
Mark Cutter
Human dignity and technology
223(8)
Daniel Statman
AUTONOMY AND PRIVACY
The collection and management of confidential genetic data. An evaluation of deCODE genetics based on the principle of autonomy
231(6)
Pascal Schwarz
Do biobanks promote paternalism? On the loss of autonomy in the quest for individual independence
237(6)
Bjørn Hofmann
Monozygotic autonomy and genetic privacy
243(6)
Anne Maria Skrikerud
Privacy in public
249(8)
Salvor Nordal
GENETIC SCREENING, EUGENICS, AND COMMODIFICATION
Genetic screening, prospective parenthood, and the internal perspective
257(6)
Peter Herissone-Kelly
The ugly curve --- genetic screening into the 21st century
263(6)
Asterios Tsioumanis
Konstadinos Mattas
Elsa Tsioumani
Categorizing genes: Commodifying people?
269(8)
Donald Bruce
GENETIC MEDICINE AND GENETIC RESEARCH
Interpretation of genetic data for medical and public health uses
277(6)
Paul A. Schulte
Perceptions of risk and human genetic databases: Consent and confidentiality policies
283(8)
Timothy Caulfield
Individual boundaries and the impact of genetic databases upon collectivist cultures: Molecular, cognitive and philosophical views
291(8)
Janet K. Brewer
RESEARCH BIOBANKS
Mapping the language of research-biobanks and health registries: From traditional biobanking to research biobanking. A project presentation
299(8)
Jan Helge Solbakk
Soren Holm
Paula Lobato de Faria
Jennifer Harris
Anne Cambon-Thomsen
Marit Halvorsen
Camilla Stoltenberg
Roger Strand
Bjorn Hofmann
Anne Maria Skrikerud
Jan Reinert Karlsen
UK Biobank: Social and political landscapes
307(6)
Helen Busby
Cell line research with UK Biobank. Why the new British biobank is not just another population genetic database
313(10)
Sebastian Sethe
BENEFIT-SHARING, JUSTICE, AND DISCRIMINATION
Benefit-sharing and public trust in genetic research
323(10)
Graeme Laurie
Kathryn G. Hunter
Biobanks and the ``social'' in social justice
333(6)
Sarah Wilson
Policy for human genetic resources as compared to environmental genetic resources
339(8)
Karin Erika Bengtsson
Problems with targeting law reform at genetic discrimination
347
Mark J. Taylor

Supplemental Materials

What is included with this book?

The New copy of this book will include any supplemental materials advertised. Please check the title of the book to determine if it should include any access cards, study guides, lab manuals, CDs, etc.

The Used, Rental and eBook copies of this book are not guaranteed to include any supplemental materials. Typically, only the book itself is included. This is true even if the title states it includes any access cards, study guides, lab manuals, CDs, etc.

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