Acknowledgements

In memoriam

Prologue

Bartha Maria KNOPPERS

Section 1 - 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 RANNAMÄE

Surveying the Population Biobankers

Geneviéve CARDINAL, Myléne DESCHÊNES

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 and 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. PRÉAUBERT, C. DUBREUIL, J. DUCHIER, B. JANSEN, J SIMON, P. LOBATO DE FARIA, A. PEREZ-LEZAUN, B. VISSER, G. WILLIAMS, J.C. GALLOUX and on behalf of the EUROGENBANK Consortium

Mutation Databases and Ethical Considerations

Richard G.H. COTTON, Ourania HORAITIS

Section 2 - 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 WRONG-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 and Barbara A. KOENIG

Problematizing the Notion of "Community" in Research Ethics

Fern BRUNGER

On the Intersection of Privacy, Consent, Commerce and Genetics Research

Jon F. MERZ

A Presumed-Consent Model for Regulating Informed Consent of Genetic Research Involving DNA Banking

Bernice ELGER, Alexandre MAURON

Ethical and Legal Issues In Genetic Biobanking

John A. ROBERTSON

Do the Ethical Duties of Donor, and Administrators, Depend on Whether the Database is Public or Private?

Darryl MACER

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

Darren SHICKLE, Rhydian HAPGOOD, Jane CARLISLE, Phil SHACKLEY, Ann MORGAN and Chris MCCABE

Section 3 - Of Commerce, Patents and Benefit-Sharing

Commercial Biobanks and Genetic Research: Banking Without Checks?

Mary Ruth ANDERLIK

PXE International: Harnessing Intellectual Property Law for Benefit-Sharing

Patrick F. TERRY

Advances in Science and Progress of Humanity: A Global Perspective on DNA Sampling

Huanming YANG

Benefit-Sharing in the New Genomic Marketplace: Expanding the Ethical Frame of Reference

Ted SCHRECKER

Harmonizing Commercialisation and Gene Patent Policy with Other Social Goals

Lorraine SHEREMETA, E. Richard GOLD, and Timothy CAULFIELD

Preliminary Data on U.S. DNA Based Patents and Plans for a Survey of Licensing Practices

Robert COOK-DEEGAH, LeRoy WALTERS, Lori PRESSMAN, Derrick PA U, Stephen MCCORMACK, Janella GATCHALIAN, and Richard BURGES

Towards a Universal Definition of "Benefit-Sharing"

Maria Graciela DE ORTÚZAR

Do Patents Encourage or Inhibit Genomics as a Global Public Good?

Halla THORSTEINDÓTTIR. Abdallah S. DAAR, Richard 6D. SMITH, Peter A. SINGER

Patents and Benefit-Sharing as a Challenge for Corporate Ethics

Chris MACDONALD

Pharmaceutical Patents and Benefit-Sharing: Evolution of Drug Accessibility in Brazil since the 1980's

M.B. MARQUES

Reconciling Social Justice and Economic Opportunism: Regulating the Newfoundland Genome

Daryl PULLMAN, Andrew LATUS

Section 4 - Of Information and Discrimination

Attitudes to Genetic Research and Uses of Genetic Information: Support, Concerns and Genetic Discrimination

Martin RICHARDS

Genetic Information and Insurance: Some Issues

Charles BLACK

Discrimination

Moussa CHARAFEDDINE

"Genetic Discrimination" in an International Context

Dorothy C. WERTZ

Additional Ethical Issues in Genetic Medicine Perceived by the Potential Patients

Jackie LEACH SCULLY, Christine RIPPBERGER, Christoph REHMANN-SUTTER

Epilogue - Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations

Why another Statement from the RMGA?

Claude LABERGE