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.
Monday, April 7, 2014
Beth Emet Synagogue
1224 Dempster St
Evanston, IL 60202
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 19 disorders. 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 Prenatel Panel Test. This screens for 85 recessive disorders (including 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 trigger of mental retardation in males, caused by a mutation on the X chromosome. The cost of the Universal panel is the same as the panel of Jewish genetic disorders. Fragile X testing would be an additional cost if you are not using insurance.
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 Panel Test 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 $180 per person. The subsidized screening is made possible by a grant from the Jewish Federation of Metropolitan Chicago and supported in part by IDT Integrated DNA Technologies. 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. Genetic counseling (via phone) is sometimes offered but usually not required. 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. 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 screening program offered by the Center for Jewish Genetics six times throughout the year. The program is funded by a grant from the Jewish Federation of Metropolitan Chicago and supported in part by IDT Integrated DNA Technologies.
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 $180 per person. You will also have the option of using insurance for a portion of your testing, and your reduced fee to the Center would be $80 per person. For information on payment options, please refer to the question “Do I pay when I register for the program? How do I pay?” in the section on registration.
If you have to cancel, we require 48 hours’ notice. Each spot in our program is valuable and we bring more staff depending on how many people are signed up. Therefore, we ask that you let us know if you have to cancel 48 hours before the program, otherwise you will be charged a cancellation fee of $25 per person.
The program begins with a kosher dinner and an educational presentation for informed consent. Afterwards, participants will meet individually or as a couple with a genetic counselor and will have their blood drawn in the order in which they arrived that evening. Individuals are free to leave after they are screened.
No. DorYeshorim 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.
While none of the disorders we screen for are exclusive to Jews, the genetic screening looks for mutations that are found almost exclusively in the Ashkenazi Jewish population. Appropriate screening for a non-Ashkenazi partner can be discussed with the Center’s genetic counselor.
However, any partner who wishes to attend the program without being screened in order to hear the educational presentation, meet privately with the genetic counselor and have dinner, is welcome and encouraged to do so for $18.
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.
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 19 disorders, 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.
No, you do not need to be affiliated with the venue in which we are holding the program in order to attend. These institutions host our program as a service to the community, and anyone who follows the registration procedures and is eligible is welcome to attend. Synagogue membership does not grant any special privileges.
Once registration is open, you may sign up for the program by filling out our online form. After submitting the form, a Center staff member will contact you regarding next steps and payment. Your spot in our program is NOT guaranteed until you receive confirmation from a Center staff member. In order to receive confirmation, you must fill out the registration form and provide credit card information (via phone call) before your registration is complete.
Our bimonthly 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 Taryn Gluskin at (312) 357-4988 or TarynGluskin@juf.org to be added to the e-newsletter list.
Yes. In order to confirm your reservation, we must have a credit card on file. Once you email your registration form, please call the Center to provide credit card payment. Once those two pieces are received, you will receive a confirmation email. To pay, please do so over the phone by contacting Taryn Gluskin at (312) 357-4988. PLEASE DO NOT EMAIL YOUR CREDIT CARD INFORMATION.
Please be aware that we will not charge your credit card until after the program date. All personal information and payments will be kept in a secure location.
In order to be screened, you must attend the entire program. Our educational presentation occurs at the beginning of the evening and is necessary for informed consent. Therefore, those who arrive more than 15 minutes late will not be eligible for screening.
No, there are no time slots. All participants must plan on attending the entire program. Following the informational presentation and dinner, participants meet with a genetic counselor and have their blood drawn in the order in which they arrived that evening. Individuals are free to leave after they are screened. Everyone is usually done by 9pm, but there are exceptions.
Please contact Taryn Gluskin at (312) 357-4988 or TarynGluskin@juf.org with any further questions.