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本文引用的文献

1
Information needs of mothers regarding communicating BRCA1/2 cancer genetic test results to their children.母亲在向子女传达BRCA1/2癌症基因检测结果方面的信息需求。
Genet Test. 2007 Fall;11(3):249-55. doi: 10.1089/gte.2006.0534.
2
Life after BRCA1/2 testing: family communication and support issues.BRCA1/2检测后的生活:家庭沟通与支持问题
Breast Dis. 2006;27:127-36. doi: 10.3233/bd-2007-27108.
3
Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study.家庭系统特征与对癌症易感性基因检测的心理调适:一项前瞻性研究。
Clin Genet. 2007 Jan;71(1):35-42. doi: 10.1111/j.1399-0004.2007.00731.x.
4
Ethical issues in cancer genetics: I 1) whose information is it?
J Genet Couns. 2006 Dec;15(6):491-503. doi: 10.1007/s10897-006-9053-4.
5
Men's decision-making about predictive BRCA1/2 testing: the role of family.男性关于BRCA1/2预测性检测的决策:家庭的作用。
J Genet Couns. 2005 Jun;14(3):207-17. doi: 10.1007/s10897-005-0384-3.
6
Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems.男性BRCA1/2基因携带者和非携带者家庭中基因检测的沟通:模式、重点与问题
Clin Genet. 2005 Jun;67(6):492-502. doi: 10.1111/j.1399-0004.2005.00443.x.
7
Associations between relationship support and psychological reactions of participants and partners to BRCA1 and BRCA2 testing in a clinic-based sample.在一个基于诊所的样本中,关系支持与参与者及其伴侣对BRCA1和BRCA2检测的心理反应之间的关联。
Ann Behav Med. 2004 Dec;28(3):211-25. doi: 10.1207/s15324796abm2803_10.
8
An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriers.一项关于BRCA1和BRCA2基因携带者信息披露过程及支持需求的调查。
Am J Med Genet A. 2004 Mar 15;125A(3):267-72. doi: 10.1002/ajmg.a.20485.
9
To tell or not to tell: barriers and facilitators in family communication about genetic risk.告知还是不告知:家庭中关于遗传风险沟通的障碍与促进因素
Clin Genet. 2003 Oct;64(4):317-26. doi: 10.1034/j.1399-0004.2003.00142.x.
10
A survey of genetic counselors' strategies for addressing ethical and professional challenges in practice.一项关于遗传咨询师在实践中应对伦理和职业挑战的策略的调查。
J Genet Couns. 2002 Jun;11(3):163-86. doi: 10.1023/a:1015275022199.

养育关系质量在与子女沟通母亲BRCA1/2基因检测结果中的作用。

Role of parenting relationship quality in communicating about maternal BRCA1/2 genetic test results with children.

作者信息

DeMarco Tiffani A, Peshkin Beth N, Valdimarsdottir Heiddis B, Patenaude Andrea F, Schneider Katherine A, Tercyak Kenneth P

机构信息

Cancer Control Program, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, 3300 Whitehaven Street, Washington, DC 20007, USA.

出版信息

J Genet Couns. 2008 Jun;17(3):283-7. doi: 10.1007/s10897-007-9147-7. Epub 2008 Feb 21.

DOI:10.1007/s10897-007-9147-7
PMID:18288593
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2495773/
Abstract

It is known that many mothers rapidly share the results of their BRCA1/2 genetic testing with their children, especially adolescent children. What is less known is the extent to which these mothers may engage fathers in a discussion concerning genetic counseling and the anticipated disclosure of genetic test results to children, or seek shared decision making in this context. This short communication addresses this issue by first examining mothers' and fathers' discussions concerning a research study of family communication. In our view, this conversation likely served as a precursor to, and proxy indicator of, maternal receptivity to partner input regarding the genetic counseling/testing-results disclosure process. We further evaluated how the quality of the parenting relationship is associated with mothers' decisions to include or not include the child's father in this study. Finally, this report addresses potential ways in which the genetic counselor may be able to facilitate parental communication regarding the evolving process of disclosure of genetic information to children and adolescents.

摘要

众所周知,许多母亲会迅速将她们的BRCA1/2基因检测结果告知子女,尤其是青春期的孩子。鲜为人知的是,这些母亲在多大程度上会让父亲参与关于遗传咨询以及预期向孩子披露基因检测结果的讨论,或者在这种情况下寻求共同决策。这篇简短的交流文章通过首先审视母亲和父亲关于一项家庭沟通研究的讨论来解决这个问题。在我们看来,这次对话可能是母亲接受伴侣关于遗传咨询/检测结果披露过程的意见的先兆和替代指标。我们进一步评估了养育关系的质量与母亲决定是否让孩子的父亲参与本研究之间的关联。最后,本报告探讨了遗传咨询师能够促进父母就向儿童和青少年披露遗传信息这一不断发展的过程进行沟通的潜在方式。