As a member of the Jewish clergy, you can play an important role in promoting timely and complete carrier screening for Jewish couples. The Canavan Foundation strongly encourages you to mention the importance of carrier screening in premarital counseling and other conversations with couples of childbearing age, and to distribute the JGDC’s free brochure. Contact us for resource materials and training.
Persons of Ashkenazi and Sephardic or Mizrahi Jewish heritage are more likely than the general population to be carriers of a number of serious genetic diseases. A carrier will show no signs of the disease, but carrier couples (where both partners are carriers of the same disease) have a 1-in-4 chance with each pregnancy of a child affected by the disease. These diseases can be fatal, life-threatening or life-altering for the affected children.
Fortunately, there is genetic carrier screening available that can help an individual or couple determine their carrier status. We strongly recommend screening before starting a family, since there are more options for carrier couples who find out their status before becoming pregnant. A carrier couple can have children, but should know their status and be working with a genetic counselor before they start a family.
For More Extensive Information
We encourage you to visit the sections About Canavan Disease and Screening to refresh your understanding of the basics. You can also visit the site of our partner organization, the Jewish Genetic Disease Consortium (JGDC), for comprehensive information on the whole spectrum of Jewish genetic diseases. If you have any particular questions, we invite you to contact us.
The JGDC has a free brochure with answers to most questions, plus a complete disease list. We urge you to keep a supply in your office and distribute to all couples of childbearing age you speak with, especially engaged couples with whom you’re doing premarital counseling. Contact us for brochures.
We invite you to watch the video in which Rabbi Diana Gerson of the New York Board of Rabbis discusses how she incorporates a discussion of genetic carrier screening into premarital counseling, and the video in which a genetic counselor explains how she works with patients.
Research with Jewish couples has shown that the critical time for couples to learn about Jewish genetic diseases and genetic screening is during their engagement, just at the point when they are going to premarital counseling sessions with a rabbi or other member of the clergy.
Research has also shown that a recommendation from a member of the clergy during this premarital counseling is often the key factor in a couple’s seeking genetic screening.
We strongly urge all Jewish clergy to bring up the topic of genetic screening with couples of childbearing age during premarital counseling and to distribute the free JGDC brochures widely throughout their congregation.
All streams of Judaism in the United States have given their support to preconception genetic screening, starting with the synagogue-based Tay-Sachs screening programs in the 1970s.
The Canavan Foundation has participated in presentations at seminaries and group meetings of the Reform, Conservative and Orthodox movements, and individual rabbis from all movements have attended the training meetings and use the JGDC brochures and other materials.
Here are some questions you can use to start a conversation about carrier screening, and some points you should make sure to cover. (Taken from the JGDC’s Counseling Checklist)
Are you thinking of having children?
Anyone born into a Jewish family who is thinking of starting or adding to a family should discuss carrier screening with a doctor or genetic counselor.
Have you been screened for Jewish genetic diseases? If so, do you have a copy of your results?
Screening recommendations are updated regularly. It’s possible there are diseases that have been added to the screening recommendations since you were screened.
If you haven’t been screened, do you know where you would go?
You can go to your own doctor or the genetics program at a local hospital. The easiest place to start is usually at the women’s OB/GYN.
Do either of you know if you are a carrier for any of the Jewish genetic diseases, or have a family history of these diseases?
If you already know you're a carrier, or if you have a family history of Jewish (or other) genetic diseases, you should seek the help of a genetic counselor to understand your options.
Where did your family come from?
There are different screening recommendations for Ashkenazi and Mizrahi and Sephardic Jews. The JGDC brochure can also help you understand what’s appropriate for you.
Do you understand why it’s important to be screened before you start a family?
If you’re both found to be carriers, there is a wide range of options available to build a healthy family.
All these materials can be ordered free of charge from the Canavan Foundation. Contact us. (Please specify quantities and mailing address).
Counseling Checklist: A list of points to cover during premarital counseling and questions to start a conversation.
Brochure: A brochure to distribute to engaged and newly-married couples, or any other congregants of childbearing age.
DVD: The stories of three families affected by Jewish genetic diseases. View video on JGDC site.
The JGDC, in partnership with the Canavan Foundation and the New York Board of Rabbis, with funding from UJA-Federation of New York, has developed a comprehensive training program for Jewish clergy. Contact the JGDC for more information or to schedule a training session.
The JGDC has brought a comprehensive training session to over a dozen locations around the country. The session features a JGDC member who speaks first-hand of the impact of Jewish genetic diseases followed by a presentation on the basics of genetic diseases and carrier screening. The program concludes with discussion on the best ways to integrate Jewish genetic diseases into premarital counseling and other work with congregants of childbearing age.
The JGDC can send a representative to your synagogue for a presentation that covers the basics of genetic disease and carrier screening.
Telephone and Online training
A member of JGDC can also walk you and your colleagues through our materials on the phone, or via a WebEx training session.
If you’d like to have a presentation for your congregation on Jewish genetic diseases, the JGDC can work with you to identify a speaker and a program.
Materials for Your Website, Newsletter or E-mails
If you have a resource section on your website, we ask that you consider adding a link to this site and the JGDC site, to enable your congregants to find us easily.
If you would like to cover the issue of Jewish genetic disease screening at greater length on your website, in a newsletter or e-mail, we’d be glad to assist you with information, facts and figures and introductions to experts. Contact us.