Populations and Genetics : Legal and Socio-Ethical Perspectives

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. In Memoriam -- Prologue / Bartha Maria Knoppers -- Of Biobanks And Databases -- Uk Dna Sample Collections For Research / Frances C. Rawle -- Estonian Genome Project--large Scale Health Status Description And Dna Collection / Andres Rannamae -- Surveying The Population Biobankers / Genevieve Cardinal, Mylene Deschenes -- The Israeli Dna And Cell Line Collection: A Human Diversity Repository / David Gurwitz, Orit Kimchi, Batsheva Bonne-tamir -- Dna Data Bank Of Japan As An Indispensable Public Database / Satoru Miyazaki, Yoshio Tateno -- A Survey Of The Variability Of Dna Banks Worldwide / Nicole Palmour -- An Empirical Survey On Biobanking Of Human Genetic Material And Data In Six Eu Countries / Anne Cambon-thomsen, I. Hirtzlin, N. Preaubert, C. Dubreuil, J. Duchier, B. Jansen, J. Simon, P. Lobato De Faria, A. Perez-lezaun, B. Visser, G. Williams, J.c. Galloux -- Mutation Databases And Ethical Considerations / Richard G.h. Cotton, Ourania Horaitis -- Of Populations And Communities -- Community Engagement In Genetic Research: The Slow Code Of Research Ethics? / Eric T. Juengst -- Competing Perspectives On Reasons For Participation And Non-participation In The North Cumbria Community Genetics Project / Erica Haimes, Michael Whong-barr -- The Engagement Of Consumers In Genetics Education: Lessons Learned / Michele A. Lloyd-puryear, Penny Kyler, Gloria Weissman -- Racial Profiling Of Dna Samples: Will It Affect Scientific Knowledge About Human Genetic Variation? / Sandra Soo-jin Lee, Barbara A. Koenig. Edited By Bartha Maria Knoppers. Includes Bibliographical References. 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. 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; confidentiality