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聋人对基因检测的态度。

Attitudes of deaf individuals towards genetic testing.

作者信息

Taneja Patricia Rubal, Pandya Arti, Foley Debra L, Nicely Lauren Vanner, Arnos Kathleen S

机构信息

Department of Human Genetics, Medical College of Virginia, Virginia Commonwealth University, Richmond, Virginia, USA.

出版信息

Am J Med Genet A. 2004 Sep 15;130A(1):17-21. doi: 10.1002/ajmg.a.30051.

Abstract

Recent advances have made molecular genetic testing for several forms of deafness more widely available. Previous studies have examined the attitudes of the deaf towards genetic testing, including prenatal diagnosis. This study examines the attitudes of deaf college students towards universal newborn hearing screening, including molecular testing for specific forms of deafness, as well as the utilization of genetic test results for mate selection. We found that there may be differences in the attitudes of deaf individuals who associate closely with the deaf community (DC), and those who have equal involvement with both the deaf and hearing communities (EIC). The majority perceived newborn hearing screening for deafness to be helpful. However, more members of the EIC than the DC groups support newborn testing for genes for deafness. While there was reported interest in using genetic testing for partner selection, most participants reported they would not be interested in selecting a partner to have children with a specific hearing status. The results of this study point out important differences that genetic professionals should be aware of when counseling deaf individuals.

摘要

最近的进展使针对多种形式耳聋的分子基因检测更为普及。以往的研究探讨了聋人对基因检测(包括产前诊断)的态度。本研究考察了聋人大学生对新生儿普遍听力筛查(包括针对特定形式耳聋的分子检测)的态度,以及利用基因检测结果进行择偶的情况。我们发现,与聋人社区联系紧密的聋人与在聋人和听力社区中参与程度相同的聋人在态度上可能存在差异。大多数人认为针对耳聋的新生儿听力筛查是有帮助的。然而,与聋人社区组相比,更多的“双社区参与组”成员支持对耳聋基因进行新生儿检测。虽然有报道称对利用基因检测进行择偶感兴趣,但大多数参与者表示他们不会有兴趣选择一个具有特定听力状况的伴侣来生育孩子。本研究结果指出了基因专业人员在为聋人提供咨询时应意识到的重要差异。

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