Godard Béatrice, Marshall Jennifer, Laberge Claude
Bioethics Programs, Faculty of Medicine, University of Montréal, Montréal, QC, Canada.
Community Genet. 2007;10(3):147-58. doi: 10.1159/000101756.
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.
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.
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.
本文介绍了创建大型基因数据库——魁北克CARTaGENE项目的首次公众咨询结果。开展此次咨询是为了评估公众对该项目的接受程度。研究人员方法的一个重要组成部分是与公众建立对话。
两个独立的专家组进行了定性和定量研究，测量了公众对遗传学的了解程度和兴趣、参与CARTaGENE项目的动机和障碍以及对沟通工具的理解和评估。
CARTaGENE项目对更广泛的人群具有前景。然而，定性和定量研究均表明，人们担心保密性、对个人的尊重、透明度、捐赠者获得反馈的权利以及管理问题。参与将取决于对这些担忧的回应以及更广泛的信息传播。
社区参与基因研究需要有针对性的沟通，合理配比信息与交流，并根据不同社会群体考虑个人的“价值观和个人利益”。
