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Our experience with the first family in the Netherlands for whom predictive DNA-testing for Hereditary Breast and Ovarian Cancer (HBOC) became an option is described. This serves to illustrate the complex emotional impact on a family as a whole, and upon the members separately, of becoming aware that breast and ovarian cancer is hereditary, and the implications of undergoing predictive testing. All family members received genetic counseling and were offered pre- and post-test psychological follow-up. We observed two important roles within the family. One member became "the messenger of the news" informing the relatives of the hereditary character of cancer in the family. Another was "the first utilizer" of the new options; namely, the predictive DNA-test and preventive surgery. This first utilizer became the example to the rest of the family. Decisions made about preventive treatment (prophylactic ovariectomy and/or mastectomy) were based on the experiences within the family, whether one identified with an affected family member with breast or with ovarian cancer. The actions and reactions perceived were illustrative of what kind of support provisions should be provided in addition to the genetic and oncological counseling for HBOC. Moreover HBOC should be considered both as an individual and a family problem and be treated as such in genetic counseling.

译文

描述了我们在荷兰第一个家庭的经验,对于该家庭,遗传性乳腺癌和卵巢癌 (HBOC) 的预测性DNA测试成为一种选择。这可以说明对整个家庭以及对成员的复杂情感影响,使他们意识到乳腺癌和卵巢癌是遗传性的,以及进行预测性测试的含义。所有家庭成员都接受了遗传咨询,并接受了测试前和测试后的心理随访。我们观察到家庭中的两个重要角色。一名成员成为 “新闻的使者”,向亲戚通报了家族中癌症的遗传特征。另一个是新选择的 “第一个利用者”; 即预测性DNA测试和预防性手术。第一个利用者成为了家庭其他成员的榜样。关于预防性治疗 (预防性卵巢切除术和/或乳房切除术) 的决定基于家庭中的经验,无论是患有乳腺癌还是卵巢癌的受影响家庭成员。所感知的行动和反应说明了除了HBOC的遗传和肿瘤咨询外,还应提供什么样的支持规定。此外,HBOC应被视为个人和家庭问题,并在遗传咨询中被视为此类问题。

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