학술논문
Community Engagement in Genetic Research : Results of the First Public Consultation for the Quebec CARTaGENE Project
Document Type
research-article
Source
Community Genetics, 2007 Jan 01. 10(3), 147-158.
Subject
Language
English
ISSN
14222795
14222833
14222833
Abstract
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.
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.
CARTa-GENE 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.
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.
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.
CARTa-GENE 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.
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.