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青少年对囊性纤维化携带者检测的态度及其随时间的相对稳定性。

Adolescents' attitude towards carrier testing for cystic fibrosis and its relative stability over time.

作者信息

Welkenhuysen M, Evers-Kiebooms G, Decruyenaere M, Van den Berghe H, Bande-Knops J, Van Gerven V

机构信息

Center for Human Genetics, University Hospital, Leuven, Belgium.

出版信息

Eur J Hum Genet. 1996;4(1):52-62. doi: 10.1159/000472170.

Abstract

Attitudes towards cystic fibrosis (CF) carrier testing, benefits of and barriers to having such a test were assessed within a randomly selected group of high school students in Flanders, after they had received sufficient basic information about the nature and the mode of inheritance of CF. Attitudes towards carrier testing for CF were not negative, but the majority preferred to wait to have a test. This result changed little after 6 months. A hypothetical testing offer from the Medical School Health Service elicited positive answers from nearly two thirds, suggesting that such an offer may function as a cue to action. Nevertheless, the appropriateness of such an offer may be questioned, considering the disadvantages of testing adolescents. Concern about a negative impact of the carrier status on self-image was reported by 10% of the students. These findings suggest that education about genetics is not only a prerequisite for allowing more informed decisions about CF carrier testing, but also for avoiding negative psychosocial effects of such a test.

摘要

在佛兰德随机抽取的一组高中生中,在他们获得了关于囊性纤维化(CF)的性质和遗传方式的足够基本信息后,评估了他们对CF携带者检测的态度、进行此类检测的益处和障碍。对CF携带者检测的态度并非负面,但大多数人倾向于等待检测。6个月后这一结果变化不大。医学院健康服务部门提出的假设性检测提议得到了近三分之二的肯定答复,这表明这样的提议可能起到行动提示的作用。然而,考虑到对青少年进行检测的弊端,这样的提议是否合适可能会受到质疑。10%的学生报告担心携带者状态会对自我形象产生负面影响。这些发现表明,遗传学教育不仅是做出关于CF携带者检测的更明智决策的先决条件,也是避免此类检测产生负面心理社会影响的先决条件。

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