Research Department of Clinical, Educational and Health Psychology, University College London, London WC1E7HB, UK.
Psychol Health. 2011 Aug;26(8):1018-35. doi: 10.1080/08870446.2010.525640. Epub 2011 Jul 28.
Genetic testing for BRCA1/2 mutations associated with hereditary breast and ovarian cancer reveals significant risk information about one's chances of developing cancer. It is important to study communication processes in families where members are undergoing genetic testing because the information received is crucial not just to the individual concerned but also to other members of the biological family. This study investigates family communication of BRCA1/2 test results from both the informants' and recipients' perspectives. A total of 10 female patients and 22 of their relatives were interviewed. Patients' and their relatives described feelings of responsibility for sharing genetic information within the family to enable others to reduce their risks of developing cancer. However, there were limits to an individuals' responsibility once key family members had been informed, who then had to take responsibility for continuing dissemination of information. Whilst there was an implicit responsibility to inform the family of a mutation, information was edited or withheld in the best interest of relatives, dependent upon their perceived emotional readiness, resilience and current life stage and circumstances. The pre-existing family culture and the impact previous cancer diagnoses had upon the family also influenced the process of communication. Findings are discussed in relation to extant literature and implications for clinical practice are considered.
BRCA1/2 基因突变与遗传性乳腺癌和卵巢癌相关的基因检测揭示了个体患癌症的风险信息。研究正在接受基因检测的家庭成员之间的沟通过程非常重要,因为所收到的信息不仅对有关个人而且对生物家庭的其他成员都至关重要。本研究从信息提供者和接受者的角度调查了 BRCA1/2 检测结果的家庭沟通。共采访了 10 名女性患者和 22 名亲属。患者及其亲属描述了在家庭中分享遗传信息以降低其他成员患癌症风险的责任。但是,一旦向关键家庭成员提供了信息,个人的责任就会受到限制,他们必须承担继续传播信息的责任。虽然有向家人告知突变的隐含责任,但信息会根据亲属的情绪准备程度、适应力以及当前的生活阶段和情况进行编辑或隐瞒,以维护其利益。先前的家庭文化以及先前的癌症诊断对家庭的影响也会影响沟通过程。研究结果与现有文献进行了讨论,并考虑了对临床实践的影响。