Community Engagement in Genetic Research: Results of the First Public Consultation for the Quebec CARTaGENE Project

Vol. 10, No. 3, 2007

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Original Paper

Community Engagement in Genetic Research: Results of the First Public Consultation for the Quebec CARTaGENE Project
Béatrice Godard^a, Jennifer Marshall^b, Claude Laberge^c

^aBioethics Programs, Faculty of Medicine, University of Montréal, Montréal,
^bHealth Law Institute, Dalhousie University, Halifax, and
^cFaculty of Medicine, Laval University, Québec, Canada

Address of Corresponding Author

Community Genet 2007;10:147-158 (DOI: 10.1159/000101756)

Key Words

Community engagement in genetic research
Biobanks
Quebec CARTaGENE project

Abstract

Objective: This paper presents the results of the first public consultation for the creation of a large-scale genetic database, the Quebec CARTaGENE project. A consultation has been undertaken in order to gauge whether the general public is receptive to the project. An integral part of the approach of the researchers is to establish a dialogue with the public. Methods: Two independent expert groups have carried out qualitative and quantitative studies measuring knowledge of and interest in genetics, incentives and obstacles to CARTaGENE participation and comprehension and evaluation of the communication tools. Results: CARTaGENE is seen to hold promise for the greater population. However, reported across qualitative and quantitative studies is the concern for confidentiality and respect for the individual, transparency, the donor's right to feedback and governance. Participation would be conditional on a response to those concerns and a greater dissemination of information. Conclusion: Community engagement in genetic research requires targeted communications, with an appropriate proportioning of information and communication, and a consideration of the 'values and personal interests' of individuals according to different societal segments.

Author Contacts

Béatrice Godard, PhD
Bioethics Programs, University of Montréal
CP 6128, succ. centre-ville
Montréal H3C 3J7 (Canada)
Tel. +1 514 343 6832, Fax +1 514 343 5738, E-Mail beatrice.godard@umontreal.ca

Article Information

Number of Print Pages : 12
Number of Figures : 4, Number of Tables : 1, Number of References : 28

Medline Abstract (ID 17575459)

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Cited In

Public Health Genomics
is the continuation of
Community Genetics

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