What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing.
What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing.
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DOI：
10.1007/s10897-006-9021-z
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发表时间：
2006-08-01
影响因子：
1.9
通讯作者：
Holt, Kathryn
中科院分区：
文献类型：
--
作者：
Holt, Kathryn
最重要的是，预测性基因检测提供了信息。深入了解这些信息的心理社会影响是遗传咨询的主要目标。对于使用预测性基因检测的个人来说，获得遗传信息需要选择在家庭内部披露。本研究采用现象学的研究方法，探讨两组HD父母在向子女披露遗传风险状况方面的不同选择。此外，孩子们(现在是成年人)讨论了他们在对比披露动态的情况下成长的生活经历，以及他们目前对自己使用预测性基因测试的看法。这项研究的主要发现是，所有成年子女现在都表示倾向于及早披露遗传风险，并对HD采取开放/支持性的沟通方式。这一发现对与HD家庭合作的临床医生具有价值，他们必须就与预测性基因测试相关的披露问题做出决定。
Above all else, predictive genetic testing provides information. Gaining insight into the psychosocial effects of this information is a primary goal of genetic counseling. For individuals utilizing predictive genetic testing, the acquisition of genetic information requires choices regarding disclosure within the family. This study uses a phenomenological methodology to explore the contrasting choices of two sets of HD parents regarding the disclosure of genetic risk status to their children. Additionally, the children (now adults) discuss their lived experience growing up with contrasting disclosure dynamics, and their current views regarding the use of predictive genetic testing for themselves. The primary finding of this study is that all of the adult children now express preference for early disclosure of genetic risk and an open/supportive communication style regarding HD. This finding has value for clinicians working with HD families who must make decisions regarding disclosure issues related to predictive genetic testing.