Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems
Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems
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DOI：
10.1111/j.1399-0004.2005.00443.x
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发表时间：
2005-06-01
影响因子：
3.5
通讯作者：
Watson, M
中科院分区：
文献类型：
--
作者：
Hallowell, N;Ardern-Jones, A;Watson, M
这项定性访谈研究探讨了在接受基因检测的高危男性家庭中传播有关预测性BRCA 1/2检测及其对儿童影响的信息的方式。对29名家庭成员[男性患者（n = 17），他们的伴侣（n = 8）和成年子女（n = 4）]进行了深入访谈。这些研讨会探讨了以下主题：癌症和基因检测的经验、关于检测的决策以及在直系亲属中交流检测结果和基因信息。访谈显示，男性患者及其伴侣都认为自己而不是卫生专业人员有责任向其子女披露有关基因检测和遗传风险的信息。父母描述了三种不同的沟通策略，以披露遗传信息给他们的孩子：完全开放，有限的披露和完全保密。从儿童的知情权和父母保护其子女不受引起焦虑的信息影响的义务的角度来看，采取特定的传播战略是有道理的。通过不同的披露模式所产生的一些问题进行了识别和临床实践的影响进行了讨论。
This qualitative interview study explored the way in which information about predictive BRCA1/2 testing and its implications for children is disseminated within the families of at-risk men who undergo genetic testing. Twenty-nine in-depth interviews were carried out with family members [male patients (n = 17), their partners (n = 8) and adult children (n = 4)]. These explored the following themes: experiences of cancer and genetic testing, decision-making about testing and the communication of test results and genetic information within the immediate family. The interviews revealed that both male patients and their partners perceive themselves, rather than health professionals, as responsible for disclosing information about genetic testing and genetic risks to their children. Parents described three different communication strategies for the disclosure of genetic information to their children: complete openness, limited disclosure and total secrecy. The adoption of a particular communication strategy was justified in terms of children's rights to information vs their parental duties to protect their children from anxiety-provoking information. Some of the problems arising from the adoption of different disclosure patterns are identified and the implications for clinical practice are discussed.