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 is a national genetic screening program that provides affordable comprehensive testing 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.
Medical Genetics Programs
Many medical centers around the country have genetics programs that offer genetic counseling and carrier screening.
Make an appointment to visit a genetic counselor near you. The counselor will ask you about your personal and family medical histories and will recommend the most appropriate carrier screening available. To find a genetic counselor near you visit: National Society of Genetic Counselors (NSGC).
Community Screening Programs
There may be a community program in your area that offers carrier screening. It is usually at a reduced price and may be at a community event.
Your Doctor’s Office
Most physicians, especially OBGYNs, are able to order carrier screening from their office. 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 be tested at your doctor’s office, it is recommended that you meet with a genetic counselor to have your results interpreted.
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 >
Insurance Coverage
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.