Human DNA: Law and Policy : International and Comparative PerspectivesBartha Maria Knoppers, Claude M. LaBerge, Marie Hirtle Martinus Nijhoff Publishers, 1997 M07 30 - 455 pages "Human DNA: Law and Policy" provides the first international debate on a topic of universal concern. No book has brought together such a diverse range of multidisciplinary ethical and legal expertise on the highly controversial issues surrounding the use, storage, exchange and sale of the very stuff' of which we are made - human genetic material. Testing of human genetic material involves a variety of samples (pathological samples, newborn screening samples, samples leftover' after testing, and research samples), shared around the world. This places consent issues on an individual, familial, and societal level. The comparative and international perspectives presented reveal the transnational nature of genetic studies. This book focuses on the issues of DNA sampling and testing, consent and confidentiality, banking policies, genetic epidemiology and diversity. Since financial and technological pressures are inextricably linked to human genetics research, commercialization and patents are also examined. Academic researchers, policy makers and industry will benefit from the learned papers and reports of the discussion, which is rich in diversity of opinion, controversial in the diversity of policy and approaches presented, anchored on scientific facts and yet sensitive to cultural, political and economic differences. |
Contents
International Ethics Guidelines and Genetic Epidemiology | 9 |
Protecting Privacy and Ownership Interests in | 33 |
The Status of Human Genetic Material European Approaches | 55 |
CONSENT AND CONFIDENTIALITY | 69 |
Choices Control Access The Canadian Position | 71 |
Differing Perspectives on Consent Choice and Control | 91 |
Dutch and Other European Approaches to the | 109 |
Rules of the Road for | 133 |
Prospective Uses of DNA Samples for Research | 291 |
Sampling Issues in Clinical Impact of Genetic Testing and | 313 |
Technical and Social Aspects of Bthalassemia Screening in | 319 |
Genetic Screening and Research Revisited | 333 |
COMMERCIALIZATIONPATENTS | 341 |
A European | 361 |
Genomic Patent and Product Development Incentives | 373 |
The Perspective from | 379 |
Stored Tissue Samples and Access to | 157 |
Genetic Studies in Populations 177 | 177 |
What Is and What Ought to Be? | 211 |
Introduction | 215 |
A Perspective from | 229 |
Ethical Concerns in Genome Diversity Studies in Developing | 257 |
Genetic Diversity A Clash of World Views? | 275 |
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Common terms and phrases
analysis anonymized samples application approach B-thalassemia Bioethics blood Canada Canadian cancer carrier cell clinical Code collected concerning confidentiality consent forms consultand Council Court cultural Cystic Fibrosis diagnostic disclosure disorders DNA banking DNA samples DNA sequences document ethics committee ethics for complexity European family members gene genetic counselling genetic disease genetic epidemiology genetic information Genetic Privacy genetic research genetic screening genetic studies genetic testing geneticists guidelines HGDP human DNA human genetic material Human Genome Project human tissue Huntington disease Ibid identifiable implications individual informed consent institutions interests invention investigators involved issues Knoppers legislation linkage mutation normative ethics obtained ownership participants patent person physician policies population genetics possible potential practice principles programs protection Protocol public health purposes recommendation recontact regarding registry regulations relatives risk scientific specific storage stored samples stored tissue samples Supra note