Populations and Genetics: Legal and Socio-Ethical Perspectives

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Bartha Maria Knoppers
Martinus Nijhoff Publishers, Jan 1, 2003 - Political Science - 648 pages
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Genetic research and testing is not limited to individuals and their families. Increasingly, there is focus on communities and even whole populations. This raises legal and socio-ethical and issues that have not been addressed. In this age of international biobanking involving populations, are current legal and ethical approaches sufficient? This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns. Possible commercialization, patents, benefit sharing, discrimination, and the role of patient organizations and of developing countries are also discussed. New perspectives and models are provided. The book concludes with a "Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations," Policymakers, academics, legislators and researchers will find this book to be current and controversial. The human genome may be mapped but the legal and socio-ethical debate is far from over.
  

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Contents

Estonian Genome Project Large Scale Health Status
17
Surveying the Population Biobankers
37
A Human Diversity
95
DNA Data Bank of Japan as an Indispensable Public Database
115
Material and Data in Six EU Countries
141
Mutation Databases and Ethical Considerations
169
The Slow
181
Competing Perspectives on Reasons for Participation and Non
199
Banking
345
Harnessing Intellectual Property Law
377
A Global
395
Other Social Goals
423
Preliminary Data on U S DNA Based Patents and Plans for
453
Towards a Universal Definition of BenefitSharing
473
Do Patents Encourage or Inhibit Genomics as a Global Public
487
Patents and BenefitSharing as a Challenge for Corporate
505

Lessons
217
Will it Affect Scientific
231
Problematizing the Notion of Community in Research Ethics
245
On the Intersection of Privacy Consent Commerce
257
of Genetic Research Involving DNA Banking
269
Ethical and Legal Issues in Genetic Biobanking
297
on Whether the Database is Public or Private?
311
Evolution
525
Attitudes to Genetic Research and Uses of Genetic
567
Charles BLACK
579
Genetic Discrimination in an International Context
603
Potential Patients
623
Why another Statement from the RMGA?
641
Copyright

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