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首页> 外文期刊>Genetic testing and molecular biomarkers >Parenting Through Genetic Uncertainty: Themes in the Disclosure of Breast Cancer Risk Information to Children
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Parenting Through Genetic Uncertainty: Themes in the Disclosure of Breast Cancer Risk Information to Children

机译：父母通过基因的不确定性:主题乳腺癌风险信息的披露给孩子们

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Aim: Among mothers undergoing BRCA1/2 testing and their spouses/partners, this study sought to examine decision support needs and motivations for family communication of genetic risk information to asymptomatic children. Methods: This study gathered data from 213 tested mothers and 104 of their untested parenting partners 1 month after maternal receipt of genetic test results and upon making a decision about communicating genetic information to their child (ages 8–21 years). Data include parents’ perceived needs for family communication decision support, decision motivations, and parent-child communication. Results: Parents reported high decision support needs (e.g., educational materials, professional counseling, peer assistance). Motivations for disclosure to children among mothers and partners focused on promoting the parent-child bond and maintaining family health (55.3% and 75%, respectively) and promoting positive child affect (44.7% and 25.5%, respectively). Motivations for nondisclosure to children among mothers and partners focused on the lack of appropriateness (69.6% and 51.3%, respectively) and relative importance of genetic test results (30.4% and 48.7%, respectively). Significant discrepancies in parental motivation for family communication were observed. Decision support needs were highest among disclosing mothers with affect-related motivations [t (129) = 2.47; p = 0.01]. Parentchild communication was poorest among nondisclosing mothers concerned about the appropriateness of genetic information for their child [t (77)= -3.29; p = .002]. Conclusions: Parents receiving information about hereditary cancer predisposition have unmet needs when making decisions about disclosing genetic risk information to their asymptomatic children. These data can guide the development of cancer risk communication decision support interventions for parents undergoing such testing.
机译：目的:在母亲发生BRCA1/2测试配偶/伴侣,本研究试图检查决策支持需求和动机遗传风险的家庭沟通信息无症状的孩子。本研究收集的数据从213年测试的母亲和104年的未经测试的教育合作伙伴1月后产妇收到基因测试结果,在做决定遗传信息对他们的孩子进行沟通(年龄在8至21年)。认为家庭沟通需求的决定支持、决策动机和父子沟通。决策支持需求(例如,教育材料、专业咨询、对等援助)。孩子母亲和伙伴之间的关注促进亲子债券和维护家庭健康(分别为55.3%和75%)促进积极的孩子的影响(44.7%和25.5%,分别)。孩子母亲和伙伴之间的关注缺乏适当性(69.6%和51.3%,分别)和相对重要性的基因测试结果(分别为30.4%和48.7%)。显著差异的动机家庭沟通观察。在披露需求最高的支持母亲影响相关的动机(t (129)= 2.47;贫穷在nondisclosing母亲担心遗传信息的适当性为他们的孩子(t (77) = -3.29;结论:父母接收信息遗传性癌症易感性有未满足的需求当决定是否披露遗传风险信息的无症状的孩子。这些数据可以指导癌症的发展风险沟通决策支持干预措施等父母接受测试。

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