Deaf Adults' Reasons for Genetic Testing Depend on Cultural Affiliation: Results From a Prospective, Longitudinal Genetic Counseling and Testing Study
Deaf Adults' Reasons for Genetic Testing Depend on Cultural Affiliation: Results From a Prospective, Longitudinal Genetic Counseling and Testing Study
复制标题
DOI：
10.1093/deafed/enq012
复制
发表时间：
2010-06-01
影响因子：
2
通讯作者：
Palmer, Christina G. S.
中科院分区：
文献类型：
--
作者：
Boudreault, Patrick;Baldwin, Erin E.;Palmer, Christina G. S.
本文在第一项前瞻性纵向研究中探讨了文化归属与聋人成人进行聋哑基因检测的动机之间的关系，以探讨遗传咨询和基因检测对聋人成人和聋人社区的影响。参与者 (n = 256)，被归类为听力群体、聋哑群体或两者兼有的群体，根据涵盖 5 个生活领域的 21 个原因对测试感兴趣。调查结果表明，人们对通过测试来了解聋哑人的原因有浓厚的兴趣，但对用它来决定伴侣或生孩子的兴趣却很少。还证明了文化介导的变异。聋人和两个社区团体都认为测试比听力社区团体对更多的生活领域有用。聋人和两个社区在进一步探索、理解或加强聋人方面有着相似的动机。与“聆听”相关的动机也与这两个社区相关。我们的结论是，文化归属是构建基因检测动机的重要因素。
This article examines the relationship between cultural affiliation and deaf adults' motivations for genetic testing for deafness in the first prospective, longitudinal study to examine the impact of genetic counseling and genetic testing on deaf adults and the deaf community. Participants (n = 256), classified as affiliating with hearing, Deaf, or both communities, rated interest in testing for 21 reasons covering 5 life domains. Findings suggest strong interest in testing to learn why they are deaf, but little interest in using it for decisions about a partner or having children. Culturally mediated variation was also demonstrated. Deaf and both communities groups viewed testing as useful for more life domains than the hearing community group. Deaf and both communities had similar motivations related to further exploration, understanding, or strengthening of deafness. Motivations related to "hearing" were also relevant for both communities. We conclude that cultural affiliation is an important factor for constructing motivations for genetic testing.