At this time we are only able to screen those who live in Illinois--if you live outside of Illinois, please contact the Center and we can help you find a local screening option.
The Center is the first and only community screening program in the nation to exclusively use an advanced gene sequencing carrier panel via saliva. This new gene sequencing test is the most advanced carrier screening option available and provides the same high detection rates whether it's completed through a blood draw or saliva sample. The saliva sample allows us to provide you with high quality screening all from the privacy of your own home.
After reading through the FAQs, you may continue to our secure registration form. Once you’ve completed and submitted the form, a staff member from the Center will contact you to confirm your reservation and secure payment information. Your spot will not be reserved until payment information is received.
If we determine that you are not eligible for this program, we will provide you with an explanation and discuss your alternatives.
*If you are interested in being waitlisted for a closed program please reach out to Community Outreach Coordinator Leah Steinberg at firstname.lastname@example.org. In addition to putting yourself on a waitlist, the Center recommends you continue with registration for the first available date that you can attend as our programs are filling up quickly.
Read these FAQs to continue. You may also download the complete PDF for your records.
The “Jewish” genetic disorders are a group of conditions that are more common among Jews, particularly those of Central or Eastern European (Ashkenazi) descent. Although these disorders can occur in the general population, they do so at a significantly higher frequency in the Ashkenazi population. Every person of Ashkenazi Jewish descent has a 1 in 4 chance of being a carrier for one of the Jewish genetic disorders. Sephardic Jews (those of Middle Eastern, African or Mediterranean decent) also have conditions that are more common to their specific country of origin.
While these genetic conditions vary in severity and age of onset, most of the Jewish genetic disorders are debilitating, and some are fatal. Many of the disorders lack effective treatment at this time. Genetic counseling and carrier screening may therefore be invaluable in planning for a family.
There is no set panel of Jewish genetic disorders, and different labs screen for a different number of such conditions. At our program we currently screen for not only the 19 conditions recommended for those with Ashkenazi Jewish background but also 60+ other conditions that are inherited in the same fashion as the nineteen. Please see our website for more information about these disorders.
If you are of Ashkenazi or Sephardic descent (at least one Ashkenazi or Sephardic grandparent) and are planning on having children in the future, you may want to consider carrier screening for Jewish genetic disorders. A genetic counselor or other qualified healthcare provider can help you decide whether screening is appropriate and for which disorders to consider screening.
The Center is now able to offer an expanded panel of tests called the Counsyl Universal Genetic Test (www.counsyl.com/diseases). This screens for over 60+ recessive disorders, in addition to the 19 Jewish genetic disorders, and is designed for people of all ethnic backgrounds. The additional conditions vary greatly in terms of frequency, severity and treatment options. The panel can also include Fragile X syndrome, a common genetic cause of mental retardation in males, caused by a mutation on the X chromosome. The cost of the Prenatal panel is the same as the panel of Jewish genetic disorders. Fragile X testing is included in the pricing of this test.
There are disorders found to be more common among those of Sephardic Jewish ancestry. These disorders vary by country of origin. If your ancestors are from Northern Africa, the Mediterranean, the Middle East or Spain, please contact our genetic counselor to discuss appropriate testing. If you are of unknown, mixed, or non-Jewish ancestry, please also contact our counselor to discuss testing. The Counsyl Prenatal Genetic Test (Please see “Should my non-Ashkenazi or non-Jewish partner be screened”) may be an option for you.
The appropriate time for screening is best determined individually and depends on how you will use the information your results provide. If you will make decisions about pursuing a new relationship or continuing an existing relationship based on your results, then you may wish to get tested early on in the relationship, or before engagement or marriage. If you will be using this information to make reproductive decisions as a committed couple, then getting tested as a married, engaged or “serious” couple is appropriate.
The Center recommends that, if possible, couples get screened prior to conception. This offers the most time to consider family planning options. However, screening is still recommended to anyone who is pregnant but has not yet been screened. Testing takes approximately three weeks, so please factor this turnaround time into your plans, if timing is an issue for you.
Yes, but it depends on how far along you are in your pregnancy. If you are currently pregnant, or if you become pregnant after you register, please contact Aishwarya Arjunan, the Center’s genetic counselor, at AishwaryaArjunan@juf.org or (312) 357-4658 to discuss screening options.
Screening for Jewish genetic disorders can be very expensive if it is not fully covered by insurance, with out-of-pocket costs as high as $4,000 or more per person, depending on co-payments and deductibles.
The Center is pleased to be able to hold programs at which this screening can be done for a subsidized rate of $199 per person. The subsidized screening is made possible by a grant from the Jewish Federation of Metropolitan Chicago. If you have any type of insurance coverage, your costs may be less. Please see the section below entitled “How much does the program cost?”
There are some companies that now offer carrier screening panels through direct-to-consumer (DTC) testing. This means that you order the testing yourself through their website, and results are released to you directly. The Center’s program is not DTC testing even though it is an online process. The Center’s program differs through its educational component, a one-on-one phone call to make sure you understand the testing process and can have any questions or concerns addressed, and a follow-up with the Center’s genetic counselor to ensure you understand your results.
The American College of Medical Genetics and the National Society of Genetic Counselors cautions consumers to consider a number of issues before pursuing direct-to-consumer testing. It is important for consumers to know exactly what testing is being ordered, if they are appropriate tests based on ethnicity and personal and family history, and what the tests will tell them. It is also important to note that Genetic counseling (via phone) is sometimes offered but usually not required through DTC testing. You should discuss this information with your doctor or a genetic counselor before pursuing such testing. View our website for more information.
Genetic Education and Screening for Young Jewish Adults is a subsidized genetic education, counseling and screening program offered by the Center for Jewish Genetics bimonthly. The program is funded by a grant from the Jewish Federation of Metropolitan Chicago.
The program includes:
No, the Center does not offer screening for cancer predisposition genes. Instead, we recommend those with a strong family history of breast, ovarian, colon, or other cancers meet with a genetic counselor to assess whether the cancer in their family is likely hereditary, and to discuss screening if appropriate. For more information on hereditary cancer, please visit our website at www.jewishgenetics.org.
The subsidized screening costs $199 per person, although it may cost less depending on your insurance coverage. The Center guarantees that if you use insurance, you will be responsible for no more than $199 even if insurance denies coverage for the test. If your insurance does cover part of the testing then your responsibility would be the difference remaining.
If you have to cancel, we ask that you notify Center staff, as each webinar has a limited number of participants allowed.
No. Dor Yeshorim is a confidential genetic screening system used mainly by Orthodox Jews in which participants are given an identification number, but not their actual test results. Participants then use the system to learn their genetic “compatibility” with potential marital partners. If individuals have received testing anywhere other than DorYeshorim, or are already engaged or married, they are not eligible to use the DorYeshorim system.
The Center’s Genetic Education and Screening Program is different from DorYeshorim in that participants do receive their test results and find out if they are carriers for a particular recessive disorder. Additionally, many of our program participants are already in relationships and are therefore no longer eligible to use DorYeshorim.
For more information, see the DorYeshorim page of our website or call their New York office at (718) 384-6060.
Test results take up to three weeks to reach our genetic counselor. She then calls all individuals who are carriers, and emails all non-carriers. All participants will receive a hard copy of the results and a letter explaining their meaning. Letters are generally mailed out several weeks after results are available. Feel free to contact our genetic counselor to check on the status of your results.
In general, individuals of Ashkenazi or Sephardic Jewish descent who have not been screened for these disorders would be eligible for the subsidized screening. In order to determine eligibility for this program, an individual must complete a registration form and return it to the Center for review. Anyone who is ineligible for this program will be provided with an explanation and will be able to discuss their screening options with the Center’s genetic counselor.
Should my non-Ashkenazi or non-Jewish partner be screened?
While none of the disorders we screen for are exclusive to Jews, the new updated genetic test that we are offering at our program will look for any disease causing mutation, regardless of the ethnicity, linked to these conditions making this one of the most comprehensive carrier screening tests available. Feel free to contact our genetic counselor with any additional questions or concerns.
If you have previously been screened for some of the disorders through the Center’s subsidized program, you are not eligible to receive a second subsidy. If you have been screened elsewhere for a portion of the disorders, you may still be eligible for the subsidized screening. The Center’s genetic counselor will determine your eligibility after reviewing your registration form. Anyone who is ineligible for this program will be able to discuss their options for obtaining screening for the other disorders with the Center’s genetic counselor. Contact Aishwarya Arjunan, the Center’s genetic counselor, at (312) 357-4658 or AishwaryaArjunan@juf.org.
This is a very personal decision. Ideally, we recommend that both partners be screened to give the most accurate risk assessment, but screening one partner also significantly reduces the couple's risks. All the disorders screened at this program are recessive, and therefore both partners would need to be carriers in order to have an affected child. No genetic test has a 100% detection rate, however, as there are always other mutations for which we do not or cannot test. This means that even if one partner screens negative for the disorders they are screened for, the risks are not completely eliminated (though still greatly reduced). Another factor to consider is timing. If one partner is screened and found to be a carrier, the other partner must then arrange screening and await results, so this may weigh into your decision. To discuss your individual concerns about whether to test both partners, please contact Aishwarya Arjunan, the Center’s genetic counselor, at (312) 357-4658 or AishwaryaArjunan@juf.org.
Yes, the Center offers follow-up counseling and screening to the partners of carriers. If you or your partner is a carrier, the Center’s genetic counselor will review the counseling and screening options with you when she contacts you with your results.
Once registration is open, you may sign up for the webinar by filling out our online form at www.jewishgenetics.org/register. After submitting the form, a Center staff member will contact you regarding next steps.
Our email newsletter is the best way to keep informed of our upcoming programs and events, including but not limited to our genetic screening programs. Contact Alyssa Cohen at (312) 357-4946 or AlyssaCohen@juf.org to be added to the e-newsletter list.
No. Payment for the testing will come directly from the testing laboratory, Counsyl, after you provide your saliva sample. Counsyl will bill the cost of the testing to your insurance provider and will bill you no more than $199 depending on insurance coverage. For more details on payment structure, please see above, under, “How much does the program cost?”
Please contact Alyssa Cohen at (312) 357-4946 or AlyssaCohen@juf.org with any further questions.