Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

Surveying the Population Biobankers*

Geneviève Cardinal, Mylène Deschênes,* With the collaboration of Claudine Fecteau, and Simone Truong***

Université de Montréal, Centre de recherche en droit public


Introduction

In 2001, it was with great enthousiasm that researchers announced the completion of the human genome draft map. This research tool paved the way to new research avenues for diagnostics, treatments, drug developments, and future health service needs.

* An earlier version of this paper was prepared for and is available from the Canadian Biotechnology Advisory Committee (www.cbac-cccb.ca). The research leading to this publication was completed on February lrst, 2003. We would also like to thank the Department of Energy (USA), the Quebec Network of Applied Genetic Medicine (RMGA) of the FRSQ (Québec), Génome Québec, and Genome Canada for their financial support for the research that led to this paper.

** Geneviève Cardinal and Mylène Deschênes are lawyers, research associates, and project directors at the Centre de recherche en droit public, Université de Montréal. The authors would like to acknowledge the contribution of Alana Greenberg, Aya Khalaf, Lynda Kharaboyan, Jennifer Marshall, and Catherine Mosco. We are most grateful for the contribution of representatives from the various population research projects, who took the time to validate with us some of the data presented in this report: Prof. Ellen W. Clayton (HapMap Project), Dr Alan Doyle and Mrs Tara Camm (UK Biobank Project), Prof. Daryl Pullman (Memorial University of Newfoundland), Prof. Andrew Latus (Memorial University of Newfoundland), Dr Aire Koik (Estonian Genome Project Foundation), Dr Claude Laberge (CARTaGENE), Dr James Campbell (Autogen Ltd), Dr Greg Collier (Autogen Ltd), and Dr Edward Farmer (deCODE Genetics).

*** Claudine Fecteau is a lawyer and research associates at the Centre de recherche en droit public, Université de Montréal. Simone Truong is a lawyer and former member of the CRDP.

Bartha Maria Knoppers (éd.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.

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