Practices in synagogues regarding Jewish genetic disease education
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.
1 INTRODUCTION
Ashkenazi Jewish genetic diseases (JGDs) are a group of genetic disorders that disproportionately affect Ashkenazi, or Eastern European, Jews. Most of the JGDs are either lethal in early childhood or are associated with a shortened lifespan and impacted quality of life. In addition, almost all of these disorders have an autosomal recessive inheritance pattern; therefore, carriers are usually unaware of their carrier status. The incidence of these diseases in the Ashkenazi Jewish (AJ) population ranges from one in 900 (Gaucher disease) to one in 40,000 (mucolipidosis type IV), with studies showing that approximately one in three individuals of this ancestry is a carrier for at least one of these diseases (Klugman & Gross, 2010; Scott et al., 2010).
Carrier screening for Tay-Sachs disease (TSD) became available in the 1970s, making it the first of the JGDs to have carrier screening available. Since that time, the genes associated with many more JGDs have been identified and larger gene panels are now offered to test for the carrier status of Jewish individuals. The American College of Obstetricians and Gynecologists (ACOG) recommends that carrier testing for TSD, Canavan disease, cystic fibrosis, and familial dysautonomia be offered prior to conception or early in pregnancy to all individuals of AJ descent (ACOG committee opinion, 2017). The American College of Medical Genetics and Genomics (ACMG) also recommends carrier screening for Jewish patients for the same four diseases and for an additional five disorders: Fanconi anemia group C, Niemann-Pick type A, Bloom syndrome, mucolipidosis type IV, and Gaucher disease (Gross, Pletcher, & Monagan, 2008).
Despite these recommendations, studies have shown that most AJ individuals have never been educated about JGDs and have little knowledge about these disorders (Warsch et al., 2014). In addition, research has demonstrated that obstetricians are not consistently discussing genetic screening for JGDs with their patients, especially patients who have never been pregnant (Garber et al., 1993; Mandelberger, Robins, Buster, Strohsnitter, & Plante, 2015). Although it appears that most patients are not being educated about JGDs, research has shown that those exposed to an educational intervention are more knowledgeable about JGDs (Hegwer, Fairley, Charrow, & Ormand, 2006; Warsch et al., 2014). This knowledge may increase the desire to take preventative measures to reduce the likelihood of having an affected child, which in turn, may increase the uptake of carrier screening (Hegwer et al., 2006; Warsch et al., 2014). In order for more AJ individuals to become educated about JGDs, it is essential that many different professionals are able to have an initial discussion about these disorders. This includes rabbis, who are religious scholars formally trained in Jewish law and are typically leaders at synagogues. Rabbis are in the unique position of being trusted professionals who interact with their Jewish congregants, including couples of childbearing age.
The four primary denominations of Judaism (Reform, Orthodox, Conservative, and Reconstructionist) are supportive of JGD carrier testing. The two largest branches of Judaism in the United States, the Reform and Conservative movements, which comprise 39% and 29% of U.S. synagogue membership, respectively (Pew Research Center, 2013), have resolutions that specifically call for rabbis to be involved in educating their congregants about JGDs. While the Conservative movement does not outline specific ways rabbis should provide this education, the Reform movement encourages its members to discuss the following topics with congregants: (a) The possibility that members of a couple could be carriers for a JGD, (b) description of the JGDs for which genetic testing is available, and (c) the role of a genetic counselor and information regarding genetic centers in their area (CCAR, 2006; USCJ, 1999). The Reform movement also states that this education should be provided during premarital counseling to all couples of childbearing age (CCAR, 2006).
The two studies that have examined the practices of rabbis regarding education about JGDs have found that many rabbis are not consistently discussing this topic with their congregants. Abuelo and colleagues surveyed practicing rabbis (Reform, Conservative, and Orthodox) in Rhode Island and found that nine of 14 rabbis routinely discussed JGD carrier screening if both members of the couple were Jewish and four of 14 rabbis had this discussion if only one member of the couple was Jewish (Abuelo, Rosenstein, & Sheff, 1985). A second study found that 53% of the 175 New York rabbis surveyed (Reform, Conservative, and Orthodox) discussed JGD carrier screening with their congregants, with 75% of this group only having this discussion a few times a year or less (Steiner-Grossman & David, 1993). Additionally, participants were asked about the carrier frequency for TSD (the only JGD that could be screened for at that time) to assess the knowledge of participants. Only 24% answered this question correctly, with those answering the question incorrectly being an average of 7 years older (p = .001) and having been in practice for more years (p = .001).
While previous studies have examined the practices of rabbis regarding JGD education, there are several limitations to this body of research. At the time these studies were published (1985 and 1993), only TSD carrier screening was available; however, carrier screening is currently available for many more conditions. Furthermore, previous studies only investigated the discussion about JGDs in the context of premarital counseling and did not explore additional programming that could occur throughout the synagogue. This could include other one-on-one counseling and synagogue-wide programming. Finally, the previous studies only surveyed rabbis in a single state.
To address this gap, we conducted a study on a national scale to assess the current practices of synagogues regarding education about JGDs. The aims of this study were threefold: (a) to determine how often and in which ways education about JGDs takes place within the synagogue, (b) to assess rabbis’ knowledge of JGDs and identify which factors influence both rabbis’ knowledge and the frequency in which they counsel congregants about JGDs, and (c) to compare how education about JGDs differs between Reform and Conservative synagogues.
2 METHODS
2.1 Procedures
Case Western Reserve University's Institutional Review Board approved this study.
Practicing Reform and Conservative congregational rabbis were invited to participate in the study. Eligible participants were asked to complete an online survey created by the researcher using Qualtrics® software. The link to the survey was posted and distributed a total of three times in an 11-week period (November 2016–January 2017).
2.2 Participants
The survey was distributed to the members of the Central Conference for American Rabbis (CCAR), the rabbinic organization for the Reform movement. The purpose of the CCAR is to support its membership, which is comprised of American Reform Rabbis. The organization's mission is to empower their members to provide both religious and organizational leadership, which in turn, will strengthen the Jewish community. The CCAR offers its members professional and personal resources and publishes texts for the Reform movement. Two rabbis, the immediate past president of the CCAR and the chair of the CCAR’s task force on JGDs, posted the survey link in the CCAR’s members-only Facebook page and the CCAR’s community message board along with a letter of support for the study. The CCAR has 1,850 members, and posts made to the CCAR community message board can be accessed by all members of the CCAR.
The survey was also distributed to members of the Rabbinical Assembly (RA), the rabbinic organization for the Conservative movement. The RA is an international association of Conservative rabbis, with the majority of members practicing in the United States and Canada. The RA’s mission is to support the Conservative Rabbi and inspire the Jewish people. Like the CCAR, the RA provides resources to its membership and publishes Conservative Jewish texts. One member of the RA, a Conservative congregational rabbi, distributed the survey link with a letter of support for the study through the RA e-mail listserv called ‘Ravnet’ and through the RA’s members-only Facebook group called ‘Conservative Rabbis’. There are 1,700 members of the RA, and all of whom receive e-mails from the Ravnet listserv.
The inclusion criteria for this study are as follows: respondents must be practicing rabbis currently associated with a synagogue. Rabbis who were not currently associated with a synagogue were excluded from the study.
2.3 Instrumentation
A descriptive survey was developed, which included questions adapted from the instrument created by Steiner-Grossman and David for their 1993 study titled ‘Involvement of Rabbis in Counseling and Referral for Genetic Conditions: Results of a Survey’. Permission was obtained from the first author to adapt their questionnaire to better address the aims of the current study.
The survey consisted of 50 multiple choice, fill in the blank, and ‘check all that apply’ questions; however, no participant answered all questions because skip logic was applied to the survey. Participants also had the option of skipping any question. To provide content validity, the survey was reviewed by the current chair of the CCAR’s JGD task force, who also serves as the rabbinic advisor to the Jewish Genetic Disease Consortium, an organization dedicated to the awareness and prevention of JGDs.
Participants’ demographic information was also ascertained; this included participants’ gender, age, years in practice, branch of Judaism, current position within the synagogue, and size of congregation.
To assess how often and in what ways education about JGDs takes place within the synagogue, participants were asked if they personally educated couples about JGDs. If they responded affirmatively, they were prompted to answer questions regarding setting and frequency of education. The participants were also asked when this education takes place and how often it occurs. The participants were also asked about the specific topics discussed, distribution of written materials, and referrals provided during JGD education. Regardless of the rabbi's personal experience providing education, all participants were asked if his or her congregation offers synagogue-wide programming involving JGD education. If the participants answered affirmatively, they were asked about the type and frequency of this programming. Additionally, rabbis answered four knowledge questions to assess rabbis’ knowledge of JGDs. Each rabbi who answered all four knowledge questions was given a knowledge score (0–4).
There were several questions in the survey that were used to assess possible predictors for JGD knowledge and/or frequency of JGD education. Some of these predictors were ascertained in the demographics portion of the survey. Questions regarding additional possible predictors, such as previous experience with JGDs, attendance at a workshop about JGDs, awareness of programming outside the synagogue, and reservations about JGD counseling, were also included in the survey. Rabbis were also questioned about their perceived preparedness to discuss JGDs with congregants. Finally, participants selected the resources that they would most like to be provided with in order to help better educate their congregants about JGDs.
2.4 Data analysis
Responses from the completed surveys were entered into a database in IBM SPSS 21.0 software for Windows for statistical analysis. Frequencies were used to describe the study population and to quantitatively describe how often and in what ways education about JGDs takes place within the synagogue.
To compare how education differs between Reform and Conservative synagogues, chi-square and Fisher's exact tests were performed. To determine whether there were any predictors of JGD education frequency, ordinal multinomial logistic regression was performed, with the frequency in which rabbis educated congregants about JGDs during premarital counseling serving as the dependent variable for this regression analysis. The factors used as independent variables included the following: gender, age, years in practice, personal experience with JGDs OR carrier screening, experience taking a JGD education course, awareness of programming outside synagogue, and having reservations about providing JGD education. To determine whether there were any predictors of rabbis' knowledge of JGDs, linear regression analysis was performed, with the rabbis’ knowledge scores serving as the dependent variable. The factors used as independent variables included the following: gender, age, years in practice, personal relationship with someone with a JGD, having undergone carrier screening themselves, and experience taking a JGD education course.
Additionally, t tests were performed to assess the relationships between knowledge score and perceived preparedness to discuss JGDs, knowledge score and frequency of JGD education, and knowledge score and having reservations about providing JGD education. A p value of < .05 was considered statistically significant.
3 RESULTS
3.1 Participant demographics
A total of 110 rabbis consented to the survey; one respondent did not answer any questions beyond question 1. Of the remaining 109 participants, 92 were Reform rabbis (5% response rate) and 15 were Conservative rabbis (0.8% response rate). Fifteen respondents did not meet inclusion criteria and were directed to the end of the survey. Therefore, the study sample consisted of 94 rabbis, with 79 Reform rabbis (84%), 13 Conservative rabbis (13.8%), 1 who identified as both a Reform and a Conservative rabbi (1.1%), and one who identified as ‘other’ (1.1%).
Of the total participants, most were male (64.9%), the senior or solo rabbi at their synagogue (86.2%) and have been a practicing rabbi between six and 20 years (52.2%). Table 1 summarizes participants’ demographic information.
|
Topics N = 85 |
Number of rabbis who reported discussing topics N (%) |
|---|---|
| What carrier screening is | 75 (88.2) |
| How JGDs are inherited | 57 (67.1) |
| Why Ashkenazi Jewish people are more often affected | 43 (50.6) |
| How often Ashkenazi Jewish people are affected by JGDs | 33 (38.8) |
| Carrier frequency of JGDs | 33 (38.8) |
| Description of disorders | 32 (37.6) |
| Other | 9 (10.6) |
Note
- Summary of subjects rabbis reported discussing with congregants when providing Jewish genetic disease (JGD) education.
3.2 Reform versus Conservative
There were no statistically significant differences in JGD education found between Reform and Conservative synagogues; therefore, responses from Reform and Conservative rabbis were not separated for the remaining data analyses; however, differences in two aspects of education between Reform and Conservative rabbis did trend toward significance. Of the rabbis who provide JGD education, Conservative rabbis were more likely to educate 100% of couples seen for premarital counseling about JGDs compared to Reform rabbis (p = .07). In contrast, Reform rabbis were more likely to educate every interfaith couple (only one partner is Jewish) seen for premarital counseling about JGDs compared to Conservative rabbis (p = .08).
3.3 One-on-one counseling
Of the 94 participants, 86 (91.5%) had personally educated congregants about JGDs and all but one of these participants (98.8%) reported that this occurred during premarital counseling sessions. Forty-nine participants (58.3%) provided this education for ~100% of couples seen for premarital counseling, 23 participants (27.4%) for ~ 75% of couples, and 12 participants (14.3%) for ≤50% of couples. Further, 91.7% of respondents who provide JGD education during premarital counseling reported that they provide this education to interfaith couples. Additionally, 17 participants (20%) had provided one-on-one JGD education to individuals or couples in a setting other than premarital counseling; however, this education took place once a year or less for 12 of these participants (70.5%).
A large majority (88.2%) of rabbis reported that they explained what carrier screening was to congregants when providing JGD education. Other commonly discussed topics were the recessive inheritance pattern of JGDs (67.1%) and an explanation as to why AJ individuals are more likely to be affected by JGDs compared to the general population (50.2%) (Table 2). Some participants chose to write in an example of other topics they discussed during JGD education. Two respondents said they emphasized why it is important that carrier screening be performed prior to pregnancy, two shared personal stories, and one rabbi discussed that carrier screening is a requirement for his officiation at a wedding. One rabbi responded that he or she would tell congregants that ‘…if they are both carriers they can still get married but have to promise to use IVF with pre-implantation genetic testing’.
| Question | Responses N (%) |
|---|---|
| A parent must have a JGD in order to have a child affected by this disorder. (n = 93) |
|
|
Approximately how many JGDs can be tested for using genetic technology? (n = 91) (fill in the blank question) |
Range of responses: two to ‘well over 100’
|
|
Approximately how many American Jews of Ashkenazi descent are a carrier for at least one JGD? (n = 86) (multiple choice question) |
|
| Do you counsel differently about JGDs based on the congregants’ ethnicity (Ashkenazi vs. Sephardic/Mizrahi)? (n = 84) |
|
Note
- List of the four knowledge questions posed to participants regarding Jewish genetic diseases (JGD) and the number of rabbis who chose each response (correct answer is bolded).
Of the respondents who provided JGD education, 79/85 (92.9%) have referred their congregants for JGD carrier screening, most frequently to their congregants’ primary care physicians (46.8%) and obstetrician/gynecologists (38%). They also reported referring to genetics centers (29.1%) and screening fairs (26.6%). Of the 12.5% who reported referring congregants to other sources, JScreen, a website in which individuals can request JGD carrier screening online, was the most frequent, with three rabbis making this referral. Additionally, 81 rabbis (95.3%) reported giving congregants pamphlets or other written materials after providing JGD education.
3.4 Synagogue-wide programming
Twenty-five participants (27.8%) answered that their synagogues provided programming about JGDs other than one-on-one counseling performed by rabbis. Education session provided by healthcare professionals was the most common type of synagogue-wide programming with 12 rabbis reporting this. Other more frequently reported programming included educational sessions provided by rabbis (eight respondents), written materials posted in the synagogue (seven respondents), and screening fairs in the synagogue (six respondents). All but one respondent said synagogue-wide programming occurs once a year or less.
3.5 Knowledge scores
The four knowledge questions and corresponding scores are shown in Table 2. Each of the 78 participants who answered all four knowledge questions was given a score that ranged from 0 to 4 with a mean of 1.87. Only three participants (3.8%) answered all four questions correctly, 15 participants (19.2%) answered three questions correctly, 32 (38.5%) answered two questions correctly, 29 (37.2%) answered one question correctly, and one participant (1.3%) answered all the questions incorrectly.
3.6 Requested resources for rabbis
When asked what they would find helpful to assist with providing JGD education, the clear majority of rabbis stated that they would like to receive written materials, such as pamphlets (83.7%), a resource list for rabbis (83.7%), and a resource list for congregants (82.6%). Resource lists for rabbis and congregants could include websites to visit to learn more about JGDs, such as GeneTestNow.com. The resource lists could include names and phone numbers for local institutions that can facilitate carrier screening, such as genetics centers. However, many rabbis were also interested in education sessions for congregants (45.7%) and education sessions for rabbis (45.7%). One rabbi responded that a short video should be provided.
3.7 Potential predictors of knowledge score
The regression model used to identify predictors of rabbis’ knowledge of JGDs was found to be marginally significant (p = .08). Two predictors in this model also reached marginal significance, with >20 years of experience as a rabbi (p = .06) and not having attended an educational workshop about JGDs (p = .08) being predictors of lower knowledge scores.
In a separate analysis, the relationship between the rabbis’ perceived preparedness to educate congregants about JGDs and knowledge score was assessed; however, the difference in average score between rabbis who felt very well prepared vs. moderately well prepared was not statistically significant (p = .2). The association between knowledge of JGDs and having reservations about providing JGD education was also assessed. Respondents were given a list of nine possible reservations surrounding JGD education; participants could also choose ‘no reservations’. Knowledge scores for those who had no reservations were compared to the knowledge scores for those who selected any of the possible reservations about providing JGD education. The difference in scores between the two groups was not found to be statistically significant (p = .87).
3.8 Potential predictors of frequency of JGD education
The regression analysis performed to identify predictors of rabbis’ frequency of JGD counseling was not found to be significant as a model (p = .36); however, a trend between having no reservations about educating congregants and educating a larger percentage of couples during premarital counseling was found (p = .03).
Finally, the relationship between knowledge scores and JGD education frequency was assessed. Because most participants answered that they educated 100% of couples, the remaining categories (75%, 50%, and 25%) were collapsed into one group. The difference in knowledge scores between those who educated 100% of couples and those who educated less than 100% of couples was not found to be statistically significant (p = .17).
4 DISCUSSION
Our study demonstrates that the majority of participating Reform and Conservative rabbis provide education about JGDs to their congregants, with almost all of these participants providing this education during premarital counseling. Compared with previous studies conducted on this topic, a larger proportion of the current study's participants reported discussing this subject with their congregants (Abuelo et al., 1985; Steiner-Grossman & David, 1993). While the number of participating rabbis discussing JGDs is encouraging, discussion topics were found to be limited, and knowledge of JGDs was found to be poor. Our findings suggest that there is an opportunity for genetic professionals to partner with rabbis and their synagogues to create resources to better help couples understand JGDs and in turn, potentially increase the uptake of carrier screening.
4.1 JGD education
Compared with previous studies conducted on this subject (Abuelo et al., 1985; Steiner-Grossman & David, 1993), a much larger proportion of rabbis who participated in the current study provided JGD education to congregants, with over 90% providing this education. Moreover, greater than 90% of this group of rabbis also answered that they provided this education to interfaith couples. Studies have shown in the past that rabbis were much less likely to discuss JGDs with interfaith couples (Abuelo et al., 1985) and obstetricians were less likely to offer JGD carrier screening to women in interfaith partnerships (Garber et al., 1993). Therefore, it is encouraging that a larger proportion of survey participants reported discussing JGDs with both Jewish and interfaith couples, all of whom could be at risk for having a child with a JGD.
We found that premarital counseling remains the primary setting for JGD education in the synagogue among the respondents, with all but one rabbi answering that they discuss JGDs during this time. Because the model used to identify predictors of rabbis’ JGD counseling frequency during premarital counseling was not statistically significant (p = .36), no individual predictors could be identified as statistically significant. However, a trend emerged that showed study participants who had no reservations about providing JGD education educated congregants about JGDs more frequently (p = .03). Interestingly, those who had no reservations about providing JGD education were found to have slightly lower knowledge scores compared to those who did have reservations. Therefore, although respondents who feel comfortable providing JGD education were found to educate more frequently, this does not necessarily mean they were more prepared for this conversation.
The present study was the first to explore the content of JGD education provided by rabbis to assess the thoroughness of this discussion. We found that among the respondents, carrier screening was by far the most frequently discussed topic, followed by an explanation of the inheritance pattern of JGDs. While a significant minority of participants are discussing additional topics, these results suggest that for many study participants, most of the discussion has been about what it means to be a carrier and how one can obtain information regarding their carrier status and not about the implications of these diseases. If Jewish individuals do not understand the basics of these diseases, they may not be motivated to take the next steps to meet with a genetic counselor to be further educated about this subject.
4.2 Knowledge of JGDs
We found that on average, our participants scored below 50% on the knowledge portion of the questionnaire, demonstrating a deficit in knowledge of JGDs among this sample of rabbis. The question that assessed participants’ knowledge of the inheritance pattern of JGDs was the only question of the four knowledge questions that the clear majority of participants answered correctly. This corresponds with the most frequently reported topics discussed by rabbis in JGD education: carrier screening and recessive inheritance pattern. While this suggests that some of the more frequently discussed topics are being conveyed accurately to congregants, the low knowledge scores reveal the possibility that some information provided to congregants may be incorrect. For example, nearly 40% of rabbis reported discussing the carrier frequency for JGDs, however, less than 25% of participants answered the question assessing knowledge of carrier frequency correctly.
Two marginally significant predictors of participants’ lower knowledge scores of JGDs were identified: having over twenty years of experience as a rabbi (p = .06) and not attending educational workshops about JGDs (p = .08). This can be explained by the fact that both our current knowledge of JGDs and carrier screening methods available are different from when very experienced rabbis began practicing. If they only received education about JGDs in rabbinical schools, it is natural that they would be lacking knowledge of current practices. According to representatives from the Hebrew Union College (primary rabbinical school for Reform rabbis in the U.S.) and Jewish Theological Seminary (primary rabbinical school for Conservative rabbis in the U.S.), it is standard for rabbinical students to receive education regarding JGD carrier screening in their course related to marriage and lifecycle events. They also may receive supplemental information (Appendix S1) in professional development workshops or during formal presentations from organizations that provide JGD education within the Jewish community (C. Parrish, personal communication, September 16, 2019; A. Rosen, personal communication, September 17, 2019). Steiner-Grossman & David similarly found that those with more rabbinical experience were more likely to answer their knowledge question incorrectly (1993).
Additionally, while it is intuitive that those who have not been educated about the subject would have less knowledge, this provides evidence that educational interventions may be an effective way to increase rabbis’ knowledge of JGDs. Again, these predictors most likely did not reach statistical significance due to the small number of study participants.
4.3 Practice implications
Recommendations based on the results of this study will vary depending on individuals’ views of the role of rabbis regarding JGD education. It is the opinion of the authors that our results reveal that participating rabbis are lacking the knowledge required to have an adequate discussion about JGDs with congregants. Because rabbinical organizations have declared that providing JGD education is part of the rabbis’ professional role, we believe that rabbis should be able to provide enough accurate information for couples to make an informed decision about following up with a healthcare provider, such as a genetic counselor, for more information and possibly, carrier screening. At minimum, as supported by the CCAR’s resolution regarding JGD education in premarital counseling, rabbis should explain what a carrier is and provide couples with the carrier frequency for JGDs, a brief description of the disorders, the basics of carrier screening, and where congregants can go for follow-up information and screening (CCAR, 2006). While this is only a select amount of information that could be discussed regarding JGDs, this should be sufficient to inform couples about how common it is to be a carrier and the severity of the diseases, which may be enough to motivate couples to seek out a genetic counseling consultation.
In order for rabbis to become more informed about JGDs and in turn, discuss additional topics with congregants, rabbis will require educational resources to increase their knowledge and assist with their education. This creates an opportunity for genetic counselors to partner with rabbis and synagogues to create resources that will be helpful for rabbis and their congregants, who will eventually be seeking genetics services. While there are many different types of resources or educational interventions that could be beneficial for rabbis, we suggest that genetic counselors create a resource binder for rabbis to use as an aid when providing JGD education. The resource binder would include the information outlined above and could also include illustrations to assist in explaining recessive inheritance pattern, types of disorders, and carrier screening. The rabbi and congregant could go through the resource binder together, which would not only help rabbis become more informed, it would also ensure that they do not overlook a topic or give inaccurate information. Further, making such educational sessions more interactive could be more engaging for the congregant. In addition to the resource binder, all the information discussed could be summarized in a pamphlet that the congregants can take home, which would also include information about how to find a genetics center in their area.
4.4 Study limitations
The results of this study were limited by the number of participants. Due to the small number of Conservative rabbis who participated, this study was underpowered. Therefore, there may be significant differences in education between Reform and Conservative synagogues that could not be detected due to these limitations. In addition, the sample size was relatively small for the types of regression analyses used in this study. A larger number of participants potentially could have allowed us to identify statistically significant predictors for knowledge and JGD education frequency.
There was a very poor response rate from both groups of rabbis that were accessed for this study: 5% response rate for Reform rabbis and 0.8% response rate for Conservative rabbis. Because only a very small proportion of each group responded to the survey, there is limited generalizability even among these two groups of rabbis. The low response rate suggests that an online survey may not be the most effective tool for polling rabbis. Although the response rate was low for both groups, the response rate for Conservative rabbis was especially low. One possible explanation for this is the difference in individuals who distributed the survey to both groups. Rabbis who have served in national leadership roles in the CCAR distributed the survey to Reform CCAR members, while a general member of the RA distributed the survey to Conservative RA members. It is possible that the name recognition for members of the CCAR made these participants more willing to complete the survey.
Furthermore, because rabbis associated with other branches of Judaism, including Orthodox and Reconstructionist, could not be accessed for this study, results cannot be generalized to all rabbis throughout the country. It should be noted that these results are especially not generalizable to the Orthodox population, as some sects of Orthodox Judaism have a different process for carrier screening compared to other branches of Judaism. This is due to the fact that this group has a unique set of issues to consider when choosing the most effective way to prevent JGDs. It is very important for the Orthodox to have large families; additionally, contraceptives and pregnancy termination are not permitted (Ekstein & Katzenstein, 2001). Further, marriages are typically arranged and there are stigma surrounding families who are known to be carriers for JGDs (Ekstein & Katzenstein, 2001). For the above reasons, anonymous carrier screening program for Orthodox Jews was created called Dor Yeshorim (Ekstein & Katzenstein, 2001). Following an education session about JGDs, carrier screening is offered to high school senior girls and seminary boys to ensure testing is done prior to marriage. When a young couple is considering marriage, the families call Dor Yeshorim and provide both individuals’ identification numbers. The only information Dor Yeshorim provides is whether or not the couple is compatible based on the results of their carrier testing. A couple would not be considered compatible if both were found to be carriers for the same disorder. Due to the differences in the carrier screening process, we would expect Orthodox rabbis to have different responses to our survey.
Due to the self-selecting nature of online surveys, it is possible that rabbis who are more knowledgeable about JGDs and/or rabbis who provide education about JGDs may be more inclined to complete the survey. Further, there were no questions regarding geographic location of respondents. Finally, the knowledge portion of the survey was limited to four questions and was perhaps too brief to accurately assess rabbis’ knowledge about JGDs.
4.5 Research recommendations
The low response rate suggests that online surveys may not be the most effective technique to contact rabbis; therefore, this study could be replicated using a different recruitment method to obtain a larger study population. As one alternative method of recruitment, rabbis could complete surveys at rabbinical organizations’ national meetings. In addition, because we were only able to access Reform and Conservative rabbis, future studies should be conducted that involve rabbis from other denominations of Judaism to determine whether they have similar practices regarding JGD education in their synagogues. Another area that could be further explored is rabbis’ knowledge of JGDs. The present study found that rabbis performed poorly on our limited knowledge questionnaire; a more comprehensive knowledge questionnaire could be created to more accurately assess rabbis’ knowledge.
We suggested that a resource binder and corresponding pamphlet should be created by genetic counselors to better inform rabbis and to provide them with resources to aid in their JGD education. If these resources were created, a study could be conducted that investigates the impact of the introduction of these resources, specifically if knowledge scores improve and if the breadth of information being provided expands.
Additionally, it is important to acknowledge that JGDs are not the only genetic conditions more prevalent in the Jewish population. While hereditary breast and ovarian cancer syndrome (HBOC) was beyond the scope of this study, pathogenic variants in the BRCA1 and BRCA2 genes are also more prevalent among AJ individuals. Future research could be conducted to study the practices of educating congregants about HBOC in synagogues.
5 CONCLUSIONS
While prior research has assessed JGD education practices among rabbis, this is the first to survey rabbis since there have been significant changes to carrier screening availability. We identified in our sample population that a much larger proportion of rabbis educate congregants about JGDs compared to previous studies (Abuelo et al., 1985; Steiner-Grossman & David, 1993). Additionally, this study is the first of its kind to examine the discussion about JGDs in a comprehensive fashion. We identified that among our participants, JGD education occurs primarily during premarital counseling; however, our results indicate that the breadth of discussion topics is limited and knowledge of JGDs was poor among the participating rabbis. To address these issues, we suggest that genetic professionals create resource materials and pamphlets that include information about recessive inheritance pattern, carrier frequency, description of disorders, and information regarding genetics centers in the area. It is hoped that rabbis will use these resources to incorporate an increased amount of accurate information into their education sessions to better help couples understand JGDs and in turn, potentially increase the uptake of carrier screening.
ACKNOWLEDGEMENTS
The authors would like to thank Dr. Aaron Goldenberg for his guidance in the development and implementation of this study. We would also like to thank Rabbi Richard Block and Rabbi Peter Kasdan for assistance in the development and distribution of the survey and to Rabbi Hal Rudin-Luria for his help in the distribution of the survey. Finally, thank you to Kevin Cavanagh for assistance in statistical analysis and interpretation. This study was completed in partial fulfillment of the requirements for the first author's Master of Science degree from Case Western Reserve University. Funding for this study was provided by the Department of Genetics and Genome Sciences at Case Western Reserve University, Cleveland OH.
AUTHOR CONTRIBUTIONS
Allison Thomsen provided substantial contributions to the conception and design of the work, the acquisition, analysis, and interpretation of the data for the work, the drafting of the work, gives final approval of the version to be published, and agrees to be accountable for all aspects of the work. Anne Matthews, Anna Mitchell, and Leslie Cohen provided substantial contributions to the conception and design of the work, revising it critically for important intellectual content, gives final approval of the version to be published, and agrees to be accountable for all aspects of the work.
COMPLIANCE WITH ETHICAL STANDARDS
Conflict of interest
Allison Thomsen, Anne Matthews, Anna Mitchell, and Leslie Cohen declare that they have no conflicts of interest.
Human studies and informed consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and nation) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants for being included in this study.
Animal studies
No non-human animal studies were performed by the authors for this paper.
