Jewish Genetic Diseases FAQ
Answers to frequently asked questions
What are Jewish genetic diseases?
Jewish genetic diseases are a group of disorders that occur with high frequency in the Jewish population. Ashkenazic Jews, those whose ancestors were from Central and Eastern Europe (i.e. Poland, Russia, Germany, Lithuania, etc.), are at higher risk than the general population for several genetic diseases.
Jewish communities in Europe were small and isolated, and members tended to marry within those communities. Since it is estimated that all individuals carry a small number of gene changes (called mutations), the ones present in those small groups of European Jews became more prevalent in future generations.
What does it mean to be a "carrier" for a Jewish genetic disease?
The term “carrier” means that you have an altered copy of a gene in your genetic makeup. Being a carrier for a Jewish genetic disease has absolutely no impact on your health. Everyone is a carrier for something.
Two carrier parents have a 25% chance
of having a child with the disease.
How do I know if I'm a carrier?
There are only two ways to know if you are a carrier--get screened or have an affected child. Screening is done with a simple blood test which examines a person’s genes for changes or mutations in specific genes. You can arrange screening through the Victor Center for the Prevention of Jewish Genetic Diseases, a genetic counselor, or your physician. You are not automatically screened for any of these disorders; you must request to be screened for the complete panel of Jewish genetic diseases.
Please note that genetic testing is changing all the time. Before each pregnancy, even if you have previously been screened for Jewish genetic diseases, check that you have been screened for the most up-to-date list of Jewish genetic diseases. A list of the most updated screening options and information about all of these diseases are available at www.victorcenter.org.
What if I'm a carrier?
If you are a carrier for a genetic disease, it’s important that your partner also gets screened. Carriers and carrier couples have many options available to them for having healthy children, but it’s important to learn this information now--before starting a family. Arrange to meet with a genetic counselor to help assess your risks and to discuss options for having a healthy family.
Genetic counseling and screening are available through the Victor Center and certified genetic counselors. Contact the Victor center at www.victorcenter.org. Identify a genetic counselor near you by visiting www.nsgc.org.
Before any genetic counseling appointment, be sure to verify your insurance coverage in order to know if your appointment will be covered by your policy. Access a script to guide you in this conversation with your insurance company at http://www.victorcenter.org/1in5/insurance-script/.
Content provided by the Victor Center for the Prevention of Jewish Genetic Diseases. The mission of the Victor Center for the Prevention of Jewish Genetic Diseases is to ensure babies are born free of life-threatening and preventable Jewish genetic diseases. The Victor Center organizes and coordinates awareness campaigns, and affordable and accessible Jewish genetic disease screenings in communities and on college campuses. For more information on the Victor Center or getting screened, visit www.victorcenter.org, call 877-401-1093 or email firstname.lastname@example.org.