Rabbis and Cantors
As a member of the Jewish clergy, you can play an important role in promoting timely and complete carrier screening. 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 free brochure from the Jewish Genetic Disease Consortium. View a brief video from Canavan Foundation president Orren Alperstein here.
What You Need to Know about Jewish Genetic Diseases
Persons of Jewish heritage are more likely than the general population to be carriers of a number of serious genetic diseases. (You may be familiar with Tay-Sachs disease, which was the only one for which screening was originally available, but today there are scores of diseases for which carrier screening is available.) A carrier will show no signs of the disease, but carrier couples (where both partners are carriers of the same disease) have a one-in-four chance with each pregnancy of a child affected by the disease. These diseases can be fatal, life-threatening for the affected child.
Fortunately, genetic carrier screening 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.
It is important to note that mutations for these so called “Jewish” genetic diseases also appear in the general population, and there many other diseases for which screening is offered. Even when only one member of a couple has Jewish ancestry, carrier screening is still necessary, and individuals of Jewish heritage should consider broad-based screening.
For More 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.
You can also watch three powerful videos of personal stories of families affected genetic diseases: Evan, Lauren and Jonathan and Orren and Seth. There are also videos featuring Rabbi Diana Gerson on Premarital Counseling, genetic counselor Shivani Nazeth on Screening and Options, and Andrew and Sarah, a couple who explain what it was like to be screened.
Stress the Importance of Screening Before Pregnancy
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.
Spread the Word
The JGDC has a free brochure (view here) with answers to most questions, and a poster for your bulletin board (view here). We urge you to keep a supply in your office and distribute it to all couples of childbearing age you speak with, especially engaged couples with whom you’re doing premarital counseling. Contact us for brochures.
We have a short video you can share on your social media and in an email to your congregation guidelines on sharing the video on your soclal media, click here.
Carrier Screening and Jewish Ethics
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.
Questions to Ask A Couple in Premarital Counseling
Here are some questions you can use to start a conversation about carrier screening, and some points you should make sure to cover.
Are you thinking of having children?
Anyone 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 genetic diseases? If so, do you have a copy of your results?
Screening recommendations are updated regularly. It’s likely 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 woman’s OB/GYN. You may also wish to consider the JScreen program, accessed online.
Do either of you know if you are a carrier for any 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 genetic disease, you should seek the help of a genetic counselor to understand your options.
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.
Where is Screening Done?
Group and Individual Training
The JGDC, in partnership with the Canavan Foundation, offers comprehensive training programs for Jewish clergy and information sessions for congregations.
The training sessions features a presenter 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 clergy program includes a discussion on the best ways to integrate Jewish genetic diseases into premarital counseling and other work with congregants of childbearing age.
Contact the JGDC for more information or to schedule a training session either in person, on the phone, or via video conference.
