Recent advances in genomics and bioinformatics allow for genetic analyses on whole populations. In the fields of human genetic research and genetic medicine, such advances raise ethical issues. Indeed, consultation, governance and benefit-sharing, although not entirely new, are not central to the usual genetic studies of families and cohorts.
Because the “subject” of research is now a whole population or community, the principles that should guide such research range from the respect of the individual to the recognition of his/her participation in the pursuit of knowledge for humanity.
The Quebec Network of Applied Genetic Medicine (RMGA) of the FRSQ, as the project manager of the proposed genetic map of the Quebec population (CARTaGENE), presents to the international community a Statement of Principles. This framework seeks to direct and harmonize such large genetic studies where the population is a partner in the research.
This Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations is based on a framework of ten
1. This Statement has been approved by the board of directors of the RMGA: Gérard Bouchard, Bernard Brais, Alessandra Duncan, Daniel Gaudet, Thomas Hudson, Edward Khandjian, Bartha Maria Knoppers, Claude Laberge, Damian Labuda, Jack Puymirat, Guy A. Rouleau, Francois Rousseau, Rima Rozen, Jacques Simard, and Marc Tremblay. We wish to thank the members of the Genetics and Society Project, and especially Martin Letendre for their valuable assistance.
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.