Frequently Asked Questions

What are Jewish Genetic Diseases?

What are the diseases that are more prevalent in the Ashkenazi Jewish population?

How are the Ashkenazi Jewish Genetic Diseases inherited?

 

How common is it to carry a mutation for one of the Ashkenazi Jewish genetic diseases?

It is estimated that 1 in 5 Ashkenazi Jews is a carrier of a gene mutation for at least one of the Ashkenazi Jewish genetic diseases.

 

Does it matter if I’m Sephardic?

Yes, Sephardic Jews are at increased risk to carry mutations for different diseases than are Ashkenazi Jews.  Click here for more information.

 

What diseases are screened for at The Victor Center?

What is the cost of screening?  

 

Does insurance cover the cost of screening?

Each insurance company is different so it is not possible to know which ones cover what testing. Many insurance companies will cover the cost of screening only if a woman is already pregnant. The total cost for screening through a commercial laboratory can be more than $3,000.00. We strongly recommend that you check with your insurance company about coverage before having the screening done through insurance. The $300. cost of screening through the Victor Center is highly subsidized and cannot be billed to insurance.

 

When is the best time to be screened?

The best time to be screened is prior to starting a family. Prior to pregnancy, at-risk couples (those in which both are carriers of a mutation in the same disease gene) will have the most reproductive options available to them. (click for reproducive options)

 

What if my partner is not Jewish … Do I still need to get screened?

We recommend testing if at least one partner in a couple is Jewish. This is because many of the diseases can occur in the non-Jewish population as well, although at much lower frequencies. In such a situation, it is best to test the person of Jewish background first, and then test the partner only if the first person is found to be a carrier.

 

Can I do the screening at home?

There are several genetics laboratories that can be found on the internet that market Direct-To-Consumer genetic tests for various indications. Due to the complexities of genetic screening and testing, at the present time, it is recommended that any kind of genetic screening or testing be performed only in a medical office with face-to-face genetic counseling. Home test kits are not recommended.

 

Do I need a referral from my doctor for screening?

No. Many individuals who come to The Victor Center are referred by their rabbis or by their friends who have already been screened. Or they may read about The Victor Center in a newspaper or Jewish community newsletter.

 

How can I organize an on-campus screening at my college/university?

Contact the Outreach Coordinator for The Victor Center, for more information. She works closely with college students on all aspects of planning and implementing screening programs on college campuses.

 

How can I organize a screening program in my community/synagogue?

Contact The Victor Center for more information on how to get started. The staff at The Victor Center is available to educate your members and to help your group with fund-raising ideas. Additionally, the staff can provide everything needed for the actual screening day, including genetic counselors, supplies, phlebotomists to draw blood, packaging and shipping materials, and follow-up for results.

 

Where can I find more information on Jewish Law and screening?

www.daneisenberg.com

 

Are there other diseases that are more prevalent in the Ashkenazi Jewish population?

Yes, there are other diseases, but because of their complex inheritance patterns, they are not felt to be appropriate for population screening. These include Torsion Dystonia and Hereditary Breast/Ovarian Cancers. Because these conditions are inherited in a different pattern than those previously mentioned, and because the presence of a mutation in either of these genes has direct health implications on the individual and family, it is strongly recommended that a person undergo more comprehensive genetic counseling before choosing to screen for these two conditions.

There are also some additional recessive conditions found in the Ashkenazi Jewish population, but several factors play a role into whether or not they are included in population screening, including the carrier frequency, severity of the disease, and sensitivity of the testing. The list of diseases is constantly changing so it is important to check back often for the most up-to-date information.