Practices in synagogues regarding Jewish genetic disease education. Issue 6 (24th February 2020)

• Record Type: Journal Article
• Authors: Thomsen, Allison J.; Matthews, Anne L.; Mitchell, Anna L.; Cohen, Leslie
• Is Part Of: Journal of genetic counseling. Volume 29:Issue 6(2020)
• Page Start: 1041
• Page End: 1049
• Publication Date: 2020-02-24
• Subjects: Ashkenazi Jewish -- carrier screening; carrier testing -- Jewish genetic diseases -- population screening -- preconception -- rabbis -- synagogues; Genetic counseling -- Periodicals; 616.042
• DOI: 10.1002/jgc4.1232
• Languages: English
• ISSNs: 1059-7700

Abstract

Abstract: 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.