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为成年聋人提供的遗传咨询:沟通/语言及文化考量

Genetic counseling for deaf adults: Communication/language and cultural considerations.

作者信息

Israel J, Cunningham M, Thumann H, Arnos K S

机构信息

Genetic Services Center, Gallaudet University, 800 Florida Ave., 20002, Washington D.C., NE.

出版信息

J Genet Couns. 1992 Jun;1(2):135-53. doi: 10.1007/BF00962915.

Abstract

It has been estimated that at least 50% of congenital or early onset deafness loss has a genetic etiology. Genetic services have traditionally been utilized by hearing parents of deaf children. Deaf adults could also greatly benefit from genetic counseling services. However, many deaf adults do not seek genetic services due in part to the communication/language and cultural differences of this group. Deaf people communicate in various ways including the use of sign language, oral communication, writing, or a combination of these modes. Also, while some deaf individuals are part of the hearing culture, others are part of the Deaf culture which has its own language, values, and traditions. Culturally Deaf individuals do not see themselves as handicapped or disabled. The genetic professional's awareness of the communication/language and cultural needs of this group, as well as their agency's responsibilities under section 504 of the Rehabilitation Act of 1973, may increase the accessibility of genetic services and contribute to the provision of successful genetic counseling for deaf adults.

摘要

据估计,至少50%的先天性或早发性听力损失有遗传病因。传统上,失聪儿童的听力正常的父母会利用遗传服务。成年聋人也能从遗传咨询服务中大大受益。然而,许多成年聋人并不寻求遗传服务,部分原因是该群体存在沟通/语言和文化差异。聋人通过多种方式进行交流,包括使用手语、口头交流、书写或这些方式的组合。此外,虽然一些聋人属于听力文化群体,但另一些则属于聋人文化群体,后者有自己的语言、价值观和传统。具有聋人文化背景的个体并不认为自己有缺陷或残疾。遗传专业人员对该群体沟通/语言和文化需求的认识,以及其机构在1973年《康复法案》第504条下的责任,可能会增加遗传服务的可及性,并有助于为成年聋人提供成功的遗传咨询。

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