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“这是个情绪化的宝贝”:癌症遗传携带者家庭对遗传性乳腺癌和卵巢癌风险的计划生育决策方式

"It was an Emotional Baby": Previvors' Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk.

作者信息

Dean Marleah, Rauscher Emily A

机构信息

Department of Communication, The University of South Florida, 4202 E Fowler Ave CIS 3057, Tampa, FL, 33620, USA.

Department of Communication, Texas A&M University, College Station, TX, USA.

出版信息

J Genet Couns. 2017 Dec;26(6):1301-1313. doi: 10.1007/s10897-017-0069-8. Epub 2017 Jan 30.

Abstract

Women who test positive for a BRCA genetic mutation are at an increased risk for developing hereditary breast and ovarian cancer and have a 50% chance of passing on their genetic mutation to their children. The purpose of this study was to investigate how women who test positive for a BRCA mutation but have not been diagnosed with cancer make decisions regarding family planning. Analysis of interviews with 20 women revealed they engage in logical and emotional decision-making styles. Although women want to be logical to reduce their hereditary cancer risk, emotions often complicate their decision-making. Women experience fear and worry about a future cancer diagnosis, yet also desire to create a family, particularly having children through natural conception. That is, women negotiate having preventative surgeries in a logical doctor-recommended timeframe but also organize those decisions around emotional desires of motherhood. Overall, this study demonstrates the complex decisions women who test positive for a BRCA mutation must make in regards to genetic testing timing, family planning, and overall quality of life.

摘要

携带BRCA基因突变检测呈阳性的女性患遗传性乳腺癌和卵巢癌的风险增加,并且有50%的几率将基因突变遗传给子女。本研究的目的是调查BRCA基因突变检测呈阳性但尚未被诊断出患有癌症的女性如何做出计划生育决策。对20名女性的访谈分析显示,她们采用逻辑和情感相结合的决策方式。尽管女性希望保持理性以降低遗传性癌症风险,但情感因素常常使她们的决策变得复杂。女性既担心未来被诊断出患癌,又渴望组建家庭,尤其是通过自然受孕生育子女。也就是说,女性在医生建议的合理时间范围内协商进行预防性手术,但同时也会围绕为人母的情感愿望来安排这些决策。总体而言,本研究表明,携带BRCA基因突变检测呈阳性的女性在基因检测时机、计划生育和整体生活质量方面必须做出复杂的决策。

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