Chicago Center for Jewish Genetics Disorders - Events Calendar

Programs of Interest

Genetic Education and Screening
for Young Jewish Adults

About the Program
Education and Screening Dates and Locations
Recommended Reading
Frequently Asked Questions

About the Program:

1 in 5 Askenazi Jews is a carrier of a "Jewish" genetic disorder...and may not even know it.

With a simple blood test, you can find out if you’re at risk for passing on a debilitating, if not fatal, genetic disorder. If you’re thinking about starting a family, now’s the time to learn your risk - and your options.

The subsidized carrier testing is $90 per person or $36 for students. These tests usually cost over $3,000! Friends and family are welcome to attend the dinner and presentation for $18.

The Genetic Education & Screening Program includes:

Kosher Dinner
Genetic screening for nine disorders

Bloom's syndrome

Canavan disease

Cystic fibrosis

Familial dysautonomia

Fanconi Anemia, type C

Gaucher disease, type I

Mucolipidosis type IV (ML4)

Niemann-Pick disease, type A

Tay-Sachs disease

An informational presentation about Jewish genetic disorders
Genetic counselors from Children's Memorial Hospital (CMH) will address personal questions. Medical staff from CMH will take blood samples for screening.

Pre-registration required. Contact Rachel Sacks at 312-357-4988 or RachelSacks@juf.org.

View Fall 2009 Flyer

On the dates scheduled below, the Center will be hosting the Genetic Education and Screening Program at convenient locations around the Chicago area.

Education and Screening Dates and Locations:

Tuesday, September 1, 2009, 6:30pm-9:30pm
Anshe Emet, 3751 N. Broadway, Chicago, IL

Tuesday, December 8, 2009, 6:30pm-9:30pm
Temple Sholom, 3480 N. Lake Shore Dr., Chicago, IL

Recommended Reading:

A Young Couple's Guide to Jewish Genetic Disorders and Screening

Jewish Genetic Disorders: What You Should Know

Genetic Education and Screening for Young Jewish Adults is presented by the Chicago Center for Jewish Genetic Disorders and Children's Memorial Hospital (CMH) in cooperation with the Hillels of Illinois, the Sidney N. Shure Kehilla Program and the Young Leadership Division of the Jewish United Fund.

Frequently Asked Questions

Frequently Asked Questions About the Genetic Education and Screening for Young Jewish Adults Programs

About Jewish Genetic Disorders and Screening

What are the Jewish genetic disorders?
Should I be screened for Jewish genetic disorders?
When should I be screened for Jewish genetic disorders?
How much does Jewish genetic disorder screening cost?

Our Program

What is the Genetic Education and Screening for Young Jewish Adults Program?
What does the program include?
Does the program screen for BRCA or other cancer predisposition mutations?
What does the program cost?
What exactly happens at the program?
Is this program the same thing as Dor Yeshorim?
How long will it take to get my test results back after the program?

Eligibility and Insurance

Who is eligible for the subsidized screening?
Should my non-Jewish partner attend your program?
I have already been screened for some of these disorders. May I attend your program?
How do I know if my insurance provider will cover these screening tests?
My insurance covers this screening. May I attend the program?
Should we both get tested, or just one of us?
What if only one of us gets tested, and comes back a carrier? Can the other one be screened?

The Registration Process

How do I sign up for your next program?
How do I know when a program date is announced and registration is opened?
Do I pay when I register for the program? How do I pay?
I was on the waiting list for your last program. Does that mean that I am automatically on the reservation list for your next program?
What if I cannot attend the entire program?
Do I sign up for a specific time slot?
Who do I contact if I have additional questions about the screening program?

ABOUT JEWISH GENETIC DISORDERS AND SCREENING

What are the Jewish genetic disorders?

The "Jewish" genetic disorders are a group of conditions that are more common among Jews of 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 5 chance of being a carrier for one of the Jewish genetic disorders.

While these 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 valuable in planning for a family.

Should I be screened for Jewish genetic disorders?

If you are of Ashkenazi descent 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.

When should I be screened for Jewish genetic disorders?

When to be screened is best determined individually and it 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.

If you will use your screening results to make an important decision, such as whether to get engaged, married, or begin to try to conceive, please remember that your results will take several weeks to get back to you. Please factor this turn around time into your plans.

While whether or not to get tested prior to marriage is an individual decision, the Center does advocate 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.

How much does Jewish genetic disorder screening cost?

Screening for Jewish genetic disorders can be very expensive if it is not covered by insurance, with out-of-pocket costs of as much as $4000 per person. Even when insurance plans do cover screening, if a 20% copayment on $4,000 is required, for example, the resulting $800 co-payment may still be too costly.

The Center is therefore pleased to be able to hold screening programs at which this screening can be done for a subsidized rate of $90 per person. The subsidized screening is made possible by a grant from the Jewish Federation of Metropolitan Chicago.

OUR PROGRAM

What is the Genetic Education and Screening for Young Jewish Adults Program?

Genetic Education and Screening for Young Jewish Adults is a subsidized genetic screening program offered by the Chicago Center for Jewish Genetic Disorders four times annually, in cooperation with Hillels of Illinois, the Sidney N. Shure Kehilla Program, and the Young Leadership Division of the Jewish United Fund. The program is funded by a grant from the Jewish Federation of Metropolitan Chicago.

What does the program include?

The program includes:

Dinner (dietary laws observed)
An informational presentation about Jewish genetic disorders
Genetic screening for Bloom syndrome, Canavan disease, cystic fibrosis, familial dysautonomia, Fanconi anemia (group C), Gaucher disease (type I), mucolipidosis type IV (ML4), Niemann-Pick disease (type A), and Tay-Sachs disease
Genetic counselors from Children's Memorial Hospital available to address general and personal questions
Medical staff from Children's Memorial Hospital to take blood samples for screening

Does the program screen for BRCA or other cancer predisposition mutations?

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. Read more about hereditary cancer.

How much does the program cost?

The subsidized screening costs $90 per person, or $36 with valid student ID. 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.

What exactly happens at the program?

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.

Is this program the same thing as Dor Yeshorim?

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 Dor Yeshorim, or are already engaged or married, they are not eligible to use the Dor Yeshorim system.

The Center’s Genetic Education and Screening Program is different from Dor Yeshorim 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 Dor Yeshorim.

You can read more about Dor Yeshorim on our website, or call their New York office at (718) 384-6060.

How long will it take to get my test results back after the program?

Test results can take up to eight weeks to reach our genetic counselor. She then calls all individuals who are carriers, and mails a hard copy of the results and a letter explaining their meaning to both carriers and non-carriers. Letters are generally mailed out several weeks after results are available. If more than eight weeks have elapsed since you attended our program and you wish to check on the status of your testing, feel free to contact our genetic counselor.

ELIGIBILITY AND INSURANCE

Who is eligible for the subsidized screening?

In general, individuals of Ashkenazi Jewish descent who have not been screened for these disorders and do not have sufficient insurance coverage for this testing would be eligible for the subsidized screening. (For more information about eligibility based on insurance, please see "My insurance covers this screening. May I attend the program?") In order to determine eligibility for this program, an individual must fill out a registration form and return it to the Center’s genetic counselor 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-Jewish partner attend your program?

While none of the disorders we screen for are exclusive to Ashkenazi Jews, the genetic screening looks for mutations that are found almost exclusively in the Ashkenazi Jewish population. Therefore, if your partner has no Ashkenazi ancestry, he or she is not eligible to be screened through our program. Appropriate screening for a non-eligible 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.

I have already been screened for some of these disorders. May I attend your program?

If you have already been screened for some but not all of these 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.

How do I know if my insurance provider will cover these screening tests?

Insurance coverage for screening tests varies greatly by company and by plan. Therefore, please contact your insurer directly before going forward with screening. You may need to provide them with the applicable testing codes (CPT codes) and a diagnosis code to determine coverage. Please contact the Center for a list of the codes to give your insurer. If you are told that the tests are covered, confirm any applicable deductible, co-insurance, or co-payment amount and document your conversation. Feel free to contact the Center with any additional questions you may have.

My insurance covers this screening. May I attend the program?

If your insurance covers these tests completely or sufficiently, you may set up an appointment to meet privately with the Center’s genetic counselor at Children’s Memorial Hospital, or may be referred to another convenient genetics center. The subsidized spaces in the program are designated for individuals whose insurance does not cover screening at all or whose copayment would still be significantly higher than the costs of the program. If you have questions about insurance coverage, please contact the Center’s genetic counselor, Michelle Gilats, at (773) 880-3709 or MichelleGilats@juf.org.

If you are being screened privately but wish to attend the program to hear the educational presentation and have dinner, you are welcome to do so for $18. Please contact Rachel Sacks at (312) 357-4988 or RachelSacks@juf.org if you wish to simply attend the presentation and dinner, so that we may ensure there is enough food and space.

Should we both get tested, or just one of us?

Whether to test one partner or both partners in a couple is a very individual 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 for 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 an 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 nine disorders, the risks are not completely eliminated (though still greatly reduced). Therefore, different couples make different decisions about whether or not they should both be screened.

There may be instances when there would be a reason to test one partner prior to the other, either because one partner has a family history or one partner is not of Ashkenazi descent. If your partner is not of Ashkenazi Jewish ancestry, for example, the screening provided at our program would not be appropriate, as we screen for mutations that are almost solely found in the Ashkenazi Jewish population. For individual concerns about whether to test both partners, please contact the Center.

What if only one of us gets tested, and comes back a carrier? Can the other one be screened?

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.

THE REGISTRATION PROCESS

How do I sign up for your next program?

Once registration is open, you may sign up for the program by contacting Rachel Sacks at (312) 357-4988 or RachelSacks@juf.org. You will then be sent additional information about the program and a registration form. Please follow the directions and return the form within one week in order to determine eligibility and confirm your spot in the program. Payment is not required at the time of the reservation, but is due prior to the program date.

How do I know when a program date is announced and registration is opened?

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 Rachel Sacks at (312) 357-4988 or RachelSacks@juf.org to be added to the e-newsletter list.

Do I pay when I register for the program? How do I pay?

You do not need to pay for the program at the time of registration; however you do need to pay prior to the program date itself. You may pay by credit card or by check. If you wish to pay by credit card, please do so over the phone by contacting Rachel Sacks at (312) 357-4988. DO NOT EMAIL YOUR CREDIT CARD INFORMATION. If you wish to pay by check, please make your check out to the Chicago Center for Jewish Genetic Disorders and mail it to the following address:
ATTN: Rachel Sacks
Chicago Center for Jewish Genetic Disorders
30 South Wells Street, Room 5145
Chicago, IL 60606

Please be aware that we will not cash checks or charge credit cards until after the program date. All personal information and payments will be kept in a secure location.

I was on the waiting list for your last program. Does that mean that I am automatically on the reservation list for your next program?

No, our waiting lists are program-specific and do not carry over to subsequent programs. If you are on a waiting list and do not receive a call or email stating that there is space for you by the program date, then you will not be able to attend that program and will no longer be on a waiting list. Please contact Rachel Sacks at (312) 357-4988 or RachelSacks@juf.org to register for the subsequent program once it is announced.

What if I cannot attend the entire program?

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.

Do I sign up for a specific time slot?

No, there are no time slots. All participants must plan on attending the entire three-hour 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.

Who do I contact if I have additional questions about the screening program?

Please contact Rachel Sacks at (312) 357-4988 or RachelSacks@juf.org with any further questions.

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