For Rabbis and Cantors

As a member of the Jewish clergy, you can play an important role in promoting timely and complete carrier screening for Jewish couples. The JGDC 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.

 

 

What You Need to Know about Jewish Genetic Diseases

We encourage you to visit the sections on Jewish Genetic Diseases and Genetics and Genetic Screening to refresh your understanding of the basics.  If you have any particular questions, we invite you to contact us.

The JGDC brochure has answers to most questions, plus a complete disease list.  We urge you to keep a supply in your office and distribute to all couple of childbearing age you speak with, especially engaged couples with whom you’re doing premarital counseling. Contact us to for brochures.

Help Us Promote Timely Screening

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.

We also urge all Jewish clergy to consider signing the JGDC’s pledge to discuss genetic screening and join dozens of their colleagues who have promised to discuss genetic screening in premarital counseling.

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 JDGC has given presentations at seminaries and group meetings of the Reform, Conservative and Orthodox movements, and individual rabbis from all movements have attended our training meetings and use our brochures and other materials.

Questions to Ask and Points to Cover

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, which can be downloaded as a PDF)

Questions to Ask

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 so you have a copy of your results.

Screening recommendations are updated regularly.  It’s possible there are diseases which 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? 

Where did your family come from?

There are different screening recommendations for Ashkenazi, Mizrahi and Sephardic Jews.  The JGDC brochure can 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.

Points to Cover

If you were born into a family with Jewish ancestry and are thinking of having children, you should consider carrier screening for Jewish genetic diseases.

You can be screened at a doctor’s office or a hospital-based genetics program

Screening is based on family heritage. Your doctor or genetic counselor can help you understand the screening recommendations that apply to you.

There is a panel of 19 diseases for Ashkenazi Jews (Germany, Eastern Europe). Nearly 1 in 3 Ashkenazi Jews is a carrier of at least one of the 19 diseases.

There are nearly 20 diseases of concern to Jews of Sephardic (Mediterranean) and Mizrahi heritage (Middle East, Iran/Persia, Uzbekistan, Eastern Caucasus). Screening is done on a case-by-case basis based on family heritage. No one is screened for all diseases.

The best time to be screened is before you become pregnant.

Screening is often covered by insurance, although coverage varies from plan to plan. There may be a low-cost screening option in your community if insurance doesn’t cover screening.

Even if both of you are carriers, there are options for building a healthy family.

Screening is recommended even if only one of you was born into a Jewish family, or if you have different Jewish ancestry (Ashkenazi/Mizrahi, etc.)

Printed and other Materials

All these materials can be ordered free of charge from the JGDC via e-mail or by calling us at 855-642-6900.  Please specify quantities and mailing address.

Counseling Checklist: A list of points to cover during premarital counseling and questions to start a conversation. (Download sample as a PDF)

Brochure: A brochure to distribute to engaged and newly-married couples, or any other congregants of childbearing age. (Download sample as a PDF)

DVD: The stories of three families affected by Jewish genetic diseases. The DVD can be viewed here.

Disease Lists: (Ashkenazi Diseases PDF) (Sephardic and Mizrahi Diseases PDF)

Group and Individual Training

The JGDC, in partnership with the New York Board of Rabbis, with funding from UJA-Federation of New York, has developed a comprehensive training program for Jewish clergy. Contact us for more information or to schedule a training session.

Group Training

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.

On-Site Training

The JGDC can send a representative to your synagogue for a presentation which 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.

Congregational Presentations

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, 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.