Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project.
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.


CONCLUSIONS
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.
Godard
Béatrice
B
Bioethics Programs, Faculty of Medicine, University of Montréal, Montréal, QC, Canada. beatrice.godard@umontreal.ca
Marshall
Jennifer
J
Laberge
Claude
C
D000328:Adult; D000368:Aged; D001294:Attitude to Health; D003219:Confidentiality; D018864:Cultural Diversity; D003625:Data Collection; D004989:Ethics; D032984:Ethics, Research; D005006:Ethnicity; D015316:Genetic Therapy; D006801:Humans; D008875:Middle Aged; D008967:Molecular Biology / Q000706:statistics & numerical data*; D011792:Quebec; D012106:Research / Q000639:trends; D011795:Surveys and Questionnaires; D013689:Telephone