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英国社区对囊性纤维化携带者检测的态度:一项试点研究。

Community attitudes to cystic fibrosis carrier testing in England: a pilot study.

作者信息

Williamson R, Allison M E, Bentley T J, Lim S M, Watson E, Chapple J, Adam S, Boulton M

机构信息

Department of Biochemistry and Molecular Genetics/Regional DNA Laboratory, St Mary's Hospital Medical School, Imperial College London.

出版信息

Prenat Diagn. 1989 Oct;9(10):727-34. doi: 10.1002/pd.1970091008.

Abstract

Inexpensive and accurate carrier testing for cystic fibrosis (CF) will be possible in the near future. There are no existing studies on the attitudes of English persons in the community to carrier testing for CF or any other recessive disorder. We have conducted a trial study of 166 persons at two schools, two doctors' surgeries, and a family planning clinic. Only a minority had clear pre-existing knowledge of cystic fibrosis and its genetic nature. However, over 80 per cent of those questioned expressed interest in knowing their carrier status. Although it is well known that uptake can only be assessed when a service is in place, and while further studies are required to confirm that testing will be of interest to couples of reproductive age with no previous knowledge of CF, the data strongly suggest that there will be interest in community-wide testing for CF carrier status when such a test becomes available in the United Kingdom.

摘要

在不久的将来,进行廉价且准确的囊性纤维化(CF)携带者检测将成为可能。目前尚无关于英国社区人群对CF或任何其他隐性疾病携带者检测态度的研究。我们在两所学校、两个医生诊所和一家计划生育诊所对166人进行了一项试验研究。只有少数人此前对囊性纤维化及其遗传性质有清晰的了解。然而,超过80%的受访者表示有兴趣了解自己是否为携带者。虽然众所周知,只有在服务到位时才能评估接受程度,并且需要进一步研究来确认检测是否会引起此前对CF一无所知的育龄夫妇的兴趣,但数据强烈表明,当英国能够进行此类检测时,社区范围内对CF携带者状态检测将会受到关注。

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