Genetic testing for hearing loss: Different motivations for the same outcome
Genetic testing for hearing loss: Different motivations for the same outcome
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DOI：
10.1002/ajmg.10676
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发表时间：
2002-11-22
期刊：
影响因子：
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通讯作者：
Sagi, M
中科院分区：
文献类型：
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作者：
Dagan, O;Hochner, H;Sagi, M
最近发现的与耳聋相关的基因为听力损失的家庭和个人提供了新的选择。我们的目的是了解听力损失儿童的父母是否会从这些新的可能性中受益。共有 139 名家长填写了问卷，旨在评估他们的意愿以及选择或反对基因检测和听力产前诊断的原因。损失。耳聋和听力障碍儿童的以色列犹太父母对基因检测非常感兴趣（87%）。尽管以色列犹太人的宗教信仰非常多样化，但所有宗教部门（世俗、传统、正统和超正统）的这种高度兴趣都是相似的；然而，他们之间进行此类测试的一些原因却截然不同。对于极端正统的父母来说，与计划生育和产前诊断相关的原因明显不那么重要，但利用基因测试为听力损失儿童及其听力兄弟姐妹进行匹配的可能性是激励他们进行测试的一个重要因素。来自各个宗教界别的家长希望测试能够揭示听力损失的原因。我们的结论是，如果基因检测符合其文化规范和信仰，那么基因检测将受到广泛社区的欢迎，包括那些通常不申请遗传咨询和检测的社区。 (C) 2002 Wiley-Liss, Inc.
The recent discoveries of genes involved in deafness open new options for families and individuals with hearing loss. Our aim was to learn if parents of children with hearing loss will benefit from these new possibilities. A total of 139 parents answered questionnaires aimed at evaluating their intentions as well as their reasons to opt for or against genetic testing and prenatal diagnosis for hearing. loss. A very high interest (87%) in genetic testing was found among Israeli Jewish parents of deaf and hard-of-hearing children. Although the Jewish population in Israel is very diverse in its religious beliefs, this high interest was similar across all religious sectors (secular, traditional, orthodox, and ultraorthodox); however, some of the reasons for undertaking such a test were very different between them. Reasons related to family planning and prenatal diagnosis were significantly less important to parents from the ultraorthodox sector, but the possibility to utilize genetic testing for matchmaking the children with hearing loss and their hearing siblings was an important factor in motivating them to undertake the test. Parents from all religious sectors wished testing would shed light on the cause of the hearing loss. We conclude that genetic testing would be welcomed by a wide range of communities, including those that usually do not apply for genetic counseling and testing, if it is offered in accordance with their cultural norms and beliefs. (C) 2002 Wiley-Liss, Inc.