Genetic databases Socio-ethical issues in the collection and use of DNA
Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and leg...
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| Language: | English |
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London
Routledge
2004
Taylor and Francis Taylor & Francis Group |
| Edition: | 1 |
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| ISBN: | 9780415316798, 0415316790, 9780415316804, 0415316804 |
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| Abstract | Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases.
The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases. |
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| AbstractList | Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for and policy debates about genetic databases. Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases. The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases. Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases. The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases. 1. Introduction: Public Participation in Genetic Databases 2. Persons, Property and Gift: Exploring Languages of Tissue Donation to Biomedical Research 3. Blood Donation for Genetic Research: What Can we Learn From Donor's Narratives? 4. Levels and Styles of Participation in Genetic Databases: A Case Study of the North Cumbria Community Genetics Project 5. Informed Consent: The Contradictory Ethical Safeguards in Pharmacogenetics 6. Ambiguous Gifts: Public Anxiety, Informed Consent and Biobanks 7. Abandoning Informed Consent - The Case of Genetic Research in Population Collections 8. Children's Participation in Genetic Epidemiology: Consent and Control 9. 'Public Consent' or 'Scientific Citizenship'? What Counts as Public Participation in Population Based DNA Collections? 10. Tissue Collection and the Pharmaceutical Industry: Investigating Corporate Biobanks Oonagh Corrigan is a sociologist with a research interest in social and ethical issues surrounding developments in genetics and the pharmaceutical industry. In particular much of her work to date has focussed on the implications for human subjects involved in biomedical research and on regulatory mechanisms designed to protect such subjects. Richard Tutton is a research fellow in the Science and Technology Studies Unit (SATSU) in the Department of Sociology at the University of York. He has been researching the various social and ethical implications of developments in human genetics for several years |
| Author | Tutton, Richard Corrigan, Oonagh |
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| Copyright | 2004 Richard Tutton and Oonagh Corrigan |
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| Editor | Tutton, Richard Corrigan, Oonagh |
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| Keywords | trust icelandic PXE International National DNA Database Non-therapeutic Research UK Medical Research Council UK House issues Informed Consent Procedures Human Genetic Databases Informed Consent Medical Biobank Population Collection socio-ethical Clinical Drug Trials UK Drug Company biobank sector informed Icelandic Health Sector Database Genetic Databases DNA Bank health Estonian Genome Project consent DNA Sample Health Sector Database ALSPAC Study Public Engagement Sensitive Information UK's National Health Service Mother's Questionnaire UK Biobank wellcome Human Biological Material |
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| Snippet | Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy... Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for and policy... |
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| SubjectTerms | Amino acid sequence Bioinformatics Biotechnology Citizen participation Data processing Databases, Genetic -- ethics DNA DNA data banks Genetics Genomics Informed Consent Informed consent (Medical law) Medical ethics New Genetics Nucleotide sequence Sociology of Health and Illness |
| Subtitle | Socio-ethical issues in the collection and use of DNA |
| TableOfContents | Intro -- Genetic databases Socio-ethical issues in the collection and use of DNA -- Copyright -- Contents -- Foreword -- Contributors -- Acknowledgements -- Chapter 1 Introduction: public participation in genetic databases -- Chapter 2 Person, property and gift: exploring languages of tissue donation to biomedical research -- Chapter 3 Blood donation for genetic research: what can we learn from donors' narratives? -- Chapter 4 Levels and styles of participation in genetic databases: a case study of the North Cumbria Community Genetics Project -- Chapter 5 Informed consent: the contradictory ethical safeguards in pharmacogenetics -- Chapter 6 Ambiguous gifts: public anxiety, informed consent and biobanks -- Chapter 7 Abandoning informed consent: the case of genetic research in population collections -- Chapter 8 Children's participation in genetic epidemiology: consent and control -- Chapter 9 'Public consent' or 'scientific citizenship'? What counts as public participation in population-based DNA collections? -- Chapter 10 Tissue collection and the pharmaceutical industry: investigating corporate biobanks -- Index |
| Title | Genetic databases |
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