Lafrenière Darquise, Bouchard Karine, Godard Béatrice, Simard Jacques, Dorval Michel
Programmes de bioéthique/Département de médecine sociale et préventive, Faculté de médecine, Université de Montréal, Montréal, Québec, Canada.
J Genet Couns. 2013 Jun;22(3):323-35. doi: 10.1007/s10897-012-9559-x. Epub 2012 Dec 16.
This study examines the process of communicating BRCA1/2 genetic test results to family members, and the factors influencing disclosure. Twenty-nine semi-structured telephone interviews with BRCA1/2 tested individuals, 4 to 9 years post-notification, were conducted. Our results suggest that individual, familial, relational and socio-medical factors influence the decision to disclose/not disclose genetic test results to family members. These factors are at play in all three communication phases: the Decision-making phase, in which the individual ponders various factors before deciding to disclose test results to family members; the Disclosure phase, in which communication per se takes place; and the Reaction phase, which shapes the participant's subsequent disclosure/non-disclosure decisions. We propose a guiding framework to assist in identifying and evaluating significant factors that might shape the course and outcome of the transmission of genetic information to family members.
本研究考察了向家庭成员传达BRCA1/2基因检测结果的过程以及影响信息披露的因素。我们对29名在收到通知4至9年后接受BRCA1/2检测的个体进行了半结构化电话访谈。我们的研究结果表明,个人、家庭、关系和社会医学因素会影响向家庭成员披露或不披露基因检测结果的决定。这些因素在所有三个沟通阶段都发挥作用:决策阶段,个体在决定向家庭成员披露检测结果之前会思考各种因素;披露阶段,即实际进行沟通的阶段;反应阶段,这一阶段会影响参与者后续披露或不披露信息的决定。我们提出了一个指导框架,以协助识别和评估可能影响向家庭成员传递基因信息的过程和结果的重要因素。