Department of Genetics and Genome Sciences, Case Western Reserve University, Cleveland, OH, USA.
Department of Obstetrics and Gynecology, Medical College of Wisconsin, Milwaukee, WI, USA.
J Genet Couns. 2020 Dec;29(6):1041-1049. doi: 10.1002/jgc4.1232. Epub 2020 Feb 24.
Approximately one in three Ashkenazi Jews are carriers for an autosomal recessive Jewish genetic disease (JGD). However, studies indicate that most Jews are uneducated on this topic and obstetricians do not routinely offer carrier screening to Jewish patients. Both the Reform and Conservative movements of Judaism call for JGD education to take place within the synagogue; however, little is known about the extent of this education occurring today. An online survey was created for Reform and Conservative rabbis to assess the types of JGD education taking place within the synagogue. Additionally, the survey included questions to assess JGD knowledge and possible factors that could predict counseling activity and knowledge level. Of the 94 participants, 91% had provided education about JGDs to congregants, with 98.8% providing this education during premarital counseling sessions. For most respondents, explaining recessive inheritance pattern and carrier screening was the extent of the discussion. Additionally, the majority of rabbis scored below 50% on the knowledge portion of the survey, with an average score of 1.9/4. There were no statistically significant differences between JGD education in Reform vs. Conservative synagogues, and there were no statistically significant predictors of knowledge score or JGD education frequency. In conclusion, while the number of rabbis discussing this topic is encouraging, discussion topics were found to be limited and their knowledge of JGDs was found to be poor.
大约三分之一的阿什肯纳兹犹太人是常染色体隐性犹太遗传病（JGD）的携带者。然而，研究表明，大多数犹太人对此主题缺乏了解，妇产科医生也不会常规为犹太患者提供携带者筛查。犹太教的改革派和保守派都呼吁在犹太教堂内进行 JGD 教育；然而，目前对于这种教育的程度知之甚少。为了评估犹太教堂内进行的 JGD 教育类型，我们为改革派和保守派拉比创建了一个在线调查。此外，该调查还包括了评估 JGD 知识和可能预测咨询活动和知识水平的问题。在 94 名参与者中，91%的人曾向会众提供过 JGD 教育，其中 98.8%的人在婚前咨询期间提供此类教育。对于大多数受访者来说，解释隐性遗传模式和携带者筛查是讨论的范围。此外，大多数拉比在调查的知识部分得分低于 50%，平均得分为 1.9/4。改革派和保守派犹太教堂之间的 JGD 教育没有统计学上的显著差异，也没有统计学上显著的知识得分或 JGD 教育频率的预测因素。总之，尽管讨论这个话题的拉比人数令人鼓舞，但讨论的话题有限，他们对 JGD 的了解也很差。
