Description |
1 online resource (669 pages) |
Contents |
Acknowledgements -- In memoriam -- Prologue -- Contents -- Section 1 -- Of Biobanks and Databases -- UK DNA Sample Collections for Research -- Estonian Genome Project -- Large Scale Health Status Description and DNA Collection -- Surveying the Population Biobankers -- The Israeli DNA and Cell Line Collection: A Human Diversity Repository -- DNA Data Bank of Japan as an Indispensable Public Database -- A Survey of the Variability of DNA Banks Worldwide -- An Empirical Survey on Biobanking of Human Genetic Material and Data in Six EU Countries -- Mutation Databases and Ethical Considerations |
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Section 2 -- Of Populations and Communities -- Community Engagement in Genetic Research: The "Slow Code" of Research Ethics? -- Competing Perspectives on Reasons for Participation and Non-Participation in the North Cumbria Community Genetics Project -- The Engagement of Consumers in Genetics Education: Lessons Learned -- Racial Profiling of DNA Samples : Will it Affect Scientific Knowledge About Human Genetic Variation? -- Problematizing the Notion of "Community" in Research Ethics -- On the Intersection of Privacy, Consent, Commerce and Genetics Research |
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A Presumed-Consent Model for Regulating Informed Consent of Genetic Research Involving DNA Banking -- Ethical and Legal Issues in Genetic Biobanking -- Do the Ethical Duties of Donor, and Administrators, Depend on Whether the Database is Public or Private? -- Public Attitudes to Participating in UK Biobank : A DNA Bank, Lifestyle and Morbidity Database on 500,000 Members of the UK Public Aged 45-69 -- Section 3 -- Of Commerce, Patents and Benefit-Sharing -- Commercial Biobanks and Genetic Research: Banking Without Checks? |
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PXE International : Harnessing Intellectual Property Law for Benefit-Sharing -- Advances in Science and Progress of Humanity: A Global Perspective on DNA Sampling -- Benefit-Sharing in the New Genomic Marketplace: Expanding the Ethical Frame of Reference -- Harmonizing Commercialisation and Gene Patent Policy with Other Social Goals -- Preliminary Data on U.S. DNA Based Patents and Plans for a Survey of Licensing Practices -- Towards a Universal Definition of "Benefit-Sharing" -- Do Patents Encourage or Inhibit Genomics as a Global Public Good? |
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Patents and Benefit-Sharing as a Challenge for Corporate Ethics -- Pharmaceutical Patents and Benefit-Sharing: Evolution of Drug Accessibility in Brazil since the 1980's -- Reconciling Social Justice and Economic Opportunism: Regulating the Newfoundland Genome -- Section 4 -- Of Information and Discrimination -- Attitudes to Genetic Research and Uses of Genetic Information: Support, Concerns and Genetic Discrimination -- Genetic Information and Insurance: Some Issues -- Discrimination -- "Genetic Discrimination" in an International Context |
Summary |
Thirty-five papers from the third International DNA Sampling Conference, held in Montreal in September 2002, provide a critical discussion of the socio-ethical and legal issues surrounding DNA sampling in communities and populations around the globe. Contributors address topics related to biobanks and databases; community engagement; confidentialit |
Bibliography |
Includes bibliographical references and index |
Notes |
English |
Subject |
Medical genetics -- Law and legislation -- Congresses
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DNA fingerprinting -- Law and legislation -- Congresses
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Human population genetics -- Moral and ethical aspects -- Congresses
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DNA fingerprinting -- Law and legislation.
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Medical genetics -- Law and legislation.
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Genre/Form |
Conference papers and proceedings.
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Form |
Electronic book
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Author |
Knoppers, Bartha Maria.
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ISBN |
1280465328 |
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9781280465321 |
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9786610465323 |
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6610465320 |
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1423721683 |
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9781423721680 |
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9047402936 |
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9789047402930 |
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