Jewish Genetic Diseases Screening Program

Genetic Counseling and Screening

The Victor Centers provide full service genetic counseling and screening for all individuals and couples interested in getting screened for Jewish genetic diseases. For more information, or to schedule an appointment for Jewish genetic disease screening at the Victor Centers, please contact us.

If you do not live near one of the Victor Centers, which are located in Philadelphia, Boston, and Miami, contact us and we will help you to identify local resources. The Victor Center also offers community screenings, which have been held at synagogues, college Hillels, community centers, and other locations. For help coordinating a community screening, please contact us.

What is genetic counseling?
What is genetic screening?
Reproductive Options available to "at-risk" couples
What diseases are screened for at The Victor Centers?
What is the cost of screening?
Importance of a Quality Laboratory
Upcoming Screenings

Genetic counseling is a communication process that helps individuals, couples or families to understand genetic information such as occurrence, or the risk of occurrence, of a genetic disorder in a family. Genetic counselors help individuals make informed decisions about family planning. All individuals/couples screened at The Victor Centers receive genetic counseling as part of the screening process.

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Genetic screening is a process in which, through a simple blood test, a person’s genes are examined for changes, called mutations, in specific genes. A person who is found to carry a mutation in one or more Ashkenazi Jewish genetic disease genes is a healthy individual and is not at risk to develop the disease. Genetic screening is used to determine whether an individual or couple is at increased risk to have a baby with a hereditary disorder by passing on a gene mutation to their offspring.  It is strongly recommended that genetic screening be performed prior to pregnancy to afford the couple the most reproductive options.

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Couples who are both carriers of a mutation in the same disease-causing gene have several reproductive options to help insure the birth of a healthy child:

Prenatal Diagnosis:  As early as 10 weeks of pregnancy, through a procedure called Chorionic Villus Sampling (CVS), or at 16 weeks of pregnancy, through a procedure called amniocentesis, a small sample of the fetus’s DNA can be obtained for analysis for a specific disease(s).   Parents would then learn if the baby is going to be healthy or if it is going to have the disease.

Pre-implantation Genetic Diagnosis (PGD): With the help of a fertility doctor, a pregnancy is conceived via in vitro fertilization.  A few days after the eggs are fertilized, a single cell is removed from each 8 cell embryo for testing.  Only healthy, unaffected embryos are then implanted in the mother to further develop. 

Gamete donation: Couples may choose to get pregnant using a sperm donor, who closely matches the husband physically, but who does not carry a mutation in the same disease-causing gene as the wife.  Therefore, the resulting pregnancy would not be at risk to be affected with the disease. 

Adoption: For those who don’t wish to embark on their own pregnancy, due to the high risk of having an affected child, adoption is another option.  There are several adoption agencies to choose from, both local and national.  Couples may wish to check with their local Jewish Family and Children Services for guidance and support through the adoption process.

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The Victor Centers offer screening for 11 Jewish genetic diseases. These include Bloom syndrome, Canavan disease, Cystic Fibrosis, Familial Dysautonomia, Fanconi Anemia type C, Gaucher disease, Mucolipidosis type IV, Niemann-Pick disease Type A and Tay-Sachs disease.  The analysis is done at the Human Genetics Laboratory at Jacobi Medical Center. Screening for Glycogen Storage disease type 1A and Maple Syrup Urine Disease is also available through a commercial laboratory.

For more information on these diseases, please click here.

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Two payment options are available when you visit the Victor Center for Jewish genetic diseases:

1. If your insurance DOES cover the cost of screening: You can use your health insurance to pay for the screening, in which case we will send your blood out to your insurance company's preferred lab (e.g. Quest, LabCorp). We can provide you with the appropriate diagnosis and procedure codes for the testing, to ensure you will not be billed. However, it your responsibility to discuss specific coverage details with your insurance company before your visit. Contact us for instructions.



2. If your insurance DOES NOT cover the cost of screening: Your blood sample will be sent to the Human Genetics Lab at Jacobi Medical Center in New York, where it will be screened for a panel of 9 diseases. The Victor Centers have a special reduced rate with the lab at Jacobi, as a philanthropic organization, to make genetic screening affordable for everyone. Payment for the lab service is required at the time of the appointment.
   
   Students and newlyweds may be eligible for further reduced cost screening. Contact us to inquire about specific rates.
   
   Maple Syrup Urine Disease and Glycogen Storage Disorder- Type 1a are not included in this 9 disease panel. Screening for these diseases is available though a commercial lab for an additional fee. Payment for the lab service is required at the time of the appointment. Please call for specifics.



3. To get more information on verifying you insurance coverage click here.

Regardless of the payment option you use, there is a small fee for the office visit to cover the cost of consultation, blood draw, specimen handling and follow-up. The office visit fee can be billed to insurance. For specific rates and appointment times, please contact us.

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All couples who undergo counseling and screening through The Victor Centers can be assured that their blood samples are analyzed by a CLIA approved laboratory. CLIA, which stands for Clinical Laboratory Improvement Amendments, assures that the laboratory meets the highest standards of quality and accuracy.

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The Victor Centers Team is available to come to your local synagogue, community organization or college campus to provide education to your members about Jewish genetic diseases and the need for screening. Information on how to organize and implement a screening program can be provided as well. Contact us for more information or visit our Events page to find out more.

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