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囊性纤维化携带者状态是否存在污名化效应?

A stigmatizing effect of the carrier status for cystic fibrosis?

作者信息

Evers-Kiebooms G, Denayer L, Welkenhuysen M, Cassiman J J, Van den Berghe H

机构信息

Center for Human Genetics, Leuven, Belgium.

出版信息

Clin Genet. 1994 Nov;46(5):336-43. doi: 10.1111/j.1399-0004.1994.tb04174.x.

Abstract

The emotional impact of carrier detection for CF was assessed in a group of adults tested before 1992. Of the 200 adults who received a mailed questionnaire, 70% participated. One third were CF gene carriers. The Health Orientation Scale (HOS) was used to evaluate perceived feelings about three situations: (a) How would you describe your feelings about yourself when you consider your test result? (b) How do you think most people feel when they are told that they carry the CF gene? (c) How do you think most people feel when they are told that they do not carry the CF gene? Comparing the profiles of CF carriers and non-carriers, we found that carriers had significantly less positive feelings about themselves than non-carriers. Carriers as well as non-carriers attribute significantly more negative feelings to most carriers of the CF gene than to most non-carriers. Moreover, carriers of the Cf gene attribute more negative feelings to other CF carriers than to themselves. Analysis of variance revealed a significant effect of carrier status on self-description, as well as a significant effect of carrier status and degree of kinship with a CF patient on feelings attributed to most carriers. Although these results suggest some danger of stigmatization of CF carriers, the cognitive bias of 'illusory superiority' seems to counterbalance some of its effects.

摘要

对一组在1992年前接受检测的成年人评估了囊性纤维化(CF)携带者检测的情感影响。在收到邮寄问卷的200名成年人中,70%参与了调查。三分之一是CF基因携带者。健康取向量表(HOS)用于评估对三种情况的感知感受:(a)当你考虑自己的检测结果时,你会如何描述自己的感受?(b)你认为大多数人在被告知自己携带CF基因时会有怎样的感受?(c)你认为大多数人在被告知自己不携带CF基因时会有怎样的感受?比较CF携带者和非携带者的情况,我们发现携带者对自己的积极感受明显少于非携带者。携带者和非携带者都认为,大多数CF基因携带者比大多数非携带者有更多负面感受。此外,CF基因携带者认为其他CF携带者比自己有更多负面感受。方差分析显示携带者状态对自我描述有显著影响,以及携带者状态和与CF患者的亲属关系程度对归属于大多数携带者的感受有显著影响。尽管这些结果表明CF携带者有被污名化的一些危险,但“虚幻优越感”的认知偏差似乎抵消了其部分影响。

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