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首页> 外文期刊>AJOB Primary Research >Orthodox Ashkenazi Young Adults’Knowledge, Experiences, Attitudes, and Beliefs About Genetic Carrier Testing
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Orthodox Ashkenazi Young Adults’Knowledge, Experiences, Attitudes, and Beliefs About Genetic Carrier Testing

机译：东正教阿什肯纳齐年轻人关于基因携带者测试的知识，经验，态度和信念

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The Orthodox Ashkenazi Jewish community promotes carrier testing of young adults prior to dating in order to prevent the birth of children affected with genetic diseases. It is unclear how much this young consumer group understands about carrier testing and the testing options available to them, particularly around the inclusion or exclusion of Gaucher disease carrier screening on testing panels.Additionally, little is known about their attitudes toward the use of reproductive technologies to avoid having affected children. Methods: We conducted eight focus groups with 49 Orthodox Ashkenazi young adults. Participants were assigned to groups based on gender and whether or not they had received carrier testing. Audiotapes were transcribed and transcripts analyzed for themes.Results: Most participants expressed trust in Dor Yeshorim’s anonymous testing process, but many were unaware of other testing options. Most women were tested through Dor Yeshorim at their Jewish high schools between the ages of 17 and 18 years. Men were tested either through Dor Yeshorim or a university-based laboratory after high school, usually while they attended yeshiva. Those who had not yet been tested either had not been presented with the opportunity or planned to wait until they were in a serious relationship. The untested were less likely to participate in arranged marriages, more likely to want to know their test results, and more open to using reproductive technology. Participants had mixed attitudes about whether Gaucher disease ought to be on the Dor Yeshorim Jewish panel. In vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD) was the only assisted reproductive technology acceptable to most participants.Conclusions: There is an opportunity to educate Orthodox Ashkenazi young adults about their testing options, about the pros and cons of testing for Gaucher disease, and about the reproductive options for couples who are both carriers of the same genetic disease. Rabbis may be uniquely situated to provide referrals to culturally sensitive genetic counselors and web-based educational materials.
机译：东正教阿什肯纳齐犹太社区提倡在约会前对年轻人进行携带者测试，以防止受遗传疾病影响的儿童出生。目前尚不清楚这个年轻的消费者群体对携带者检测及其可用的检测方法了解多少，尤其是在检测小组中是否包含高彻疾病携带者筛查方面。此外，人们对他们对使用生殖技术的态度知之甚少。避免影响孩子。方法：我们与49位东正教阿什肯纳齐年轻人进行了八个焦点小组讨论。根据性别以及是否接受过携带者测试将参加者分为几组。结果：大多数参与者对Dor Yeshorim的匿名测试过程表示信任，但是许多参与者不知道其他测试选项。大多数妇女在17至18岁之间的犹太高中中通过Dor Yeshorim测试。高中毕业后，通常是在参加Yeshiva时，是通过Dor Yeshorim或大学实验室对男人进行测试。那些尚未接受测试的人没有获得机会，也没有计划等到他们之间建立认真的关系。未经测试的人参加婚姻的可能性较小，更希望了解其测试结果，并且更愿意使用生殖技术。与会人员对于是否应在Dor Yeshorim犹太人小组讨论高雪氏病存有不同的看法。植入前遗传学诊断（PGD）的体外受精（IVF）是大多数参与者唯一可接受的辅助生殖技术。结论：有机会向东正教Ashkenazi年轻人提供有关其测试选择的知识，以及针对高雪儿进行测试的利弊的机会疾病，以及同时是同一遗传病携带者的夫妇的生殖选择。拉比（Rabbis）位置独特，可为具有文化敏感性的遗传咨询师和基于网络的教育资料提供转介。

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