There are several options for where to get tested. The landscape of genetic testing is constantly evolving and it is important that you remain up-to-date with your testing. Therefore, it is recommended that you get tested under the supervision of an experienced professional in the field of reproductive genetics.
Types of Resources
At Home Genetic Screening
JScreen: JScreen is a national genetic screening program that provides affordable comprehensive testing that is done at-home. All participants register for a kit online and pay a set fee during their registration. Once their registrations have been reviewed by a genetic counselor, the participant receives a saliva kit in the mail and sends their sample directly to the lab. Results are reviewed and disclosed by a genetic counselor by phone or video conference.
During the Covid-19 crisis, JScreen is fully operational.
Medical Genetics Programs
Many hospitals around the country have medical genetics programs and offer genetic counseling and testing. You can make an appointment to visit a genetic counselor near you. During your appointment, the counselor will ask you about your personal and family’s medical histories and will recommend the most appropriate screening panel available. It is recommended that you meet with a genetic counselor if you might need genetic testing beyond the standard carrier screening panel, such as for those with a family history of a genetic condition, as additional testing may be warranted. Please keep in mind that genetic counseling consultations will be billed to your insurance as a specialist visit.
Medical genetics programs in the New York Metro area:
Hackensack University Medical Center, Hackensack, NJ
Rutgers New Jersey Medical School, Newark, NJ
St. Peter’s Healthcare System, New Brunswick, NJ
St. Joseph’s Regional Medical Center, Wayne and Paterson, NJ
Montefiore Medical Center, Bronx, NY
New York-Presbyterian Brooklyn Methodist Hospital, Brooklyn, NY
Northwell Health (formerly North Shore LIJ), Long Island, NY
Mount Sinai Center for Jewish Genetic Diseases, New York, NY
NYU Langone Medical Center, New York, NY
Beth Israel Medical Center, New York, NY
New York Presbyterian (Columbia University Medical Center), New York, NY
Weill Cornell Medicine, New York, NY
Westchester Medical Center, Valhalla, NY
Greenwich Hospital, Greenwich, CT
If you are in a different area, you can locate a genetic counselor near you with the assistance of the National Society of Genetic Counselors
Community Screening Programs
There are several community programs which offer testing, usually at a subsidized price and often at community events. Take a moment to see if any of them offer testing near you!
The Center for Jewish Genetics, greater Chicago area
Jewish Genetic Disease Center of Greater Phoenix, greater Phoenix area
Victor Centers for Jewish Genetic Diseases, Philadelphia and Miami areas
Dor Yeshorim, a confidential matching service with regards to “genetic compatibility.” Dor Yeshorim tests for a limited number of diseases and stores results in a database, but does not disclose these results to their participants.
Your Doctor’s Office
Most physicians, especially OBGYNs, are able to order carrier screening from their offices. Please note that while this option may seem convenient, not all providers are up-to-date and may not be ordering the most comprehensive genetic testing panel available. If you decide to get tested at your doctor’s office, it is recommended that you bring a comprehensive list of recommended diseases from a reputable source. Also keep in mind that for Tay-Sachs disease screening, enzyme analysis using blood is optional, as new research has established that comprehensive DNA sequencing of the Tay-Sachs gene is just as accurate as enzyme analysis.
NTSAD Position Statement 2019 Update: Standards for Tay-Sachs Carrier Screening >
Cost and insurance coverage depends on which lab or genetics program you are using. Some places will have set out-of-pocket prices and may bill your insurance. Some places will provide free testing at on-site events. Some places will bill your insurance and charge you the balance, and some labs will offer financial assistance programs to eligible parties.
Keep in mind that if you first meet with a genetic counselor, most genetics offices will bill your insurance for the office visit in addition to the cost of testing.
The JGDC may be able to help identify resources for carrier screening for those who do not have insurance or need assistance covering costs.
Many people ask if their results will impact their insurance coverage. The Genetic Information Non-Discrimination Acts of 2008 (GINA) protects Americans from being treated unfairly due to their genetic testing results. The law states that health insurers may not deny or limit coverage or charge higher premiums based on a person’s genetic information. In addition, employers may not use genetic information to make decisions about hiring, firing, promotion or job placement
IMPORTANT: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE OR GENETIC COUNSELING The information in this brochure is for informational purposes only. It is intended to give the reader a broad overview of the genetic disease screening process and the Jewish genetic diseases for which screening currently is available. This website is not intended to be a substitute for professional medical advice, diagnosis, treatment, or genetic counseling. Your physician or other qualified health care provider can assist you with any questions you may have regarding your personal situation and the Jewish genetic disease screening process. The Jewish Genetic Disease Consortium assumes no liability or responsibility for any opinions, advice, procedures, or results provided by any independent individual or entity with respect to Jewish genetic disease screening Genetic science is a rapidly developing field. The information in this website is subject to update and screening options may change.