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拉比参与遗传病咨询与转诊:一项调查结果

Involvement of rabbis in counseling and referral for genetic conditions: results of a survey.

作者信息

Steiner-Grossman P, David K L

机构信息

Section of Genetics, Brooklyn Hospital Center, NY.

出版信息

Am J Hum Genet. 1993 Dec;53(6):1359-65.

Abstract

Members of the New York Board of Rabbis were surveyed in the summer of 1991 to assess their activity in counseling congregants on issues related to genetics. Of a sample of 257 members, 181 (70.4%) responded to the questionnaire, and 175 of the responses were analyzed. More than half (56.0%) of the rabbis discussed health issues as a routine part of premarital counseling, and 22.3% had counseled a couple after prenatal diagnosis of an abnormal fetus. Orthodox rabbis were more likely than rabbis from other branches of Judaism to have contacted medical personnel in these cases, and they reported more involvement in helping families after the birth of a child with a hereditary condition or birth defect. However, a majority (90.9%) of rabbis from all branches would refer such a family for genetic counseling. Ninety-four rabbis (53.7%) discussed Tay-Sachs carrier testing with congregants. These rabbis tended to be Reform, to be younger, and to have fewer years in the rabbinate. Reform rabbis also scored significantly higher than did Orthodox or Conservative rabbis on knowledge questions about Jewish genetic diseases and were more active in distributing pertinent literature to congregants. Even though nearly 90% of the sample viewed counseling on genetic issues as part of their rabbinical role, most rabbis, even those who actually counseled on these issues, felt poorly prepared to do so. Recommendations are made for increased programming in rabbinical schools and for outreach from the genetics community.

摘要

1991年夏天,对纽约拉比委员会的成员进行了调查,以评估他们在为教友提供与遗传学相关问题的咨询方面的活动。在257名成员的样本中,181人(70.4%)回复了问卷,对其中175份回复进行了分析。超过一半(56.0%)的拉比将健康问题作为婚前咨询的常规内容进行讨论,22.3%的拉比在产前诊断出胎儿异常后为一对夫妇提供了咨询。在这些情况下,东正教拉比比犹太教其他分支的拉比更有可能联系医疗人员,并且他们报告说在帮助患有遗传性疾病或出生缺陷的孩子出生后的家庭方面参与度更高。然而,所有分支的大多数拉比(90.9%)会将这样的家庭转介进行遗传咨询。94名拉比(53.7%)与教友讨论了泰-萨克斯携带者检测。这些拉比往往是改革派,更年轻,担任拉比的年限也更少。在关于犹太遗传疾病的知识问题上,改革派拉比的得分也显著高于东正教或保守派拉比,并且在向教友分发相关文献方面更加积极。尽管近90%的样本认为就遗传问题提供咨询是他们拉比职责的一部分,但大多数拉比,甚至那些实际就这些问题提供咨询的拉比,都觉得自己在这方面准备不足。文中针对神学院增加相关课程设置以及遗传学领域进行外展工作提出了建议。

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本文引用的文献

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Tay-Sachs and the abortion controversy.泰-萨克斯病与堕胎争议。
J Relig Health. 1981 Fall;20(3):224-42. doi: 10.1007/BF01561184.
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Prenatal screening in Jewish law.犹太律法中的产前筛查。
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Genetic testing for cystic fibrosis.囊性纤维化的基因检测。
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