Human DNA: Law and Policy : International and Comparative Perspectives

Front Cover
Bartha 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.

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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
CommercializationPatents
385
PRACTICES PROCEDURES
391
Practices and Procedures in the
407
Human Tissue Banks in Europe
423
Practices and Procedures
429
Index
443
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