JScreen, Genetic Test is Saving Lives, Executive Director, Karen Grinzaid Tells Us How

JScreen is a non-profit genetic education and screening program. The JScreen test is designed for individuals between the ages of 18-45 who want to know if they are at increased risk to have a child with a genetic disease. We spoke with Karen Grinzaid, Executive Director of Jscreen. The JScreen program is based in Emory University School of Medicine’s Department of Human Genetics. With the backing and expertise of this world class genetics department, they are providing state-of-the-art testing and genetic counseling services across the U.S.

Karen, tell us about your role as a genetic counselor and why you are so passionate about what you do.

I trained as a genetic counselor and spent many years working in genetics clinics. One of the hardest parts of my job was giving parents bad news. “Your child has a life-threatening condition and there is no effective treatment at this time.” When I knew that the parents could have had genetic testing before they started their family and used that information to help plan for healthy children, it was particularly heartbreaking. Our goal at JScreen is to help parents access information about their genetic risks so they can be proactive and help ensure the health of their future children. It warms my heart to know that our work prevents suffering and helps families avoid tragedies. We recently started offering a new genetic test for hereditary cancer. In the same way, we are preventing disease and suffering by giving people information they can act on to help prevent cancer.

How did JScreen begin? Who is it intended for and how has that changed and grown?

JScreen launched in 2013 to address the need for affordable, accessible reproductive screening for the high risk Jewish community. Since then, testing has expanded to include over 200 disease genes common in other groups as well. In fact, JScreen’s ReproGEN test is intended for anyone planning to have their first child or add to their family, regardless of their background. In January of 2021, JScreen added a new testing option called CancerGEN which includes 60 cancer susceptibility genes. This test is intended for anyone over the age of 21 that wants to know their hereditary risk for cancer so they can be proactive about their health.

Tell us about the ReproGEN and CancerGEN testing process.

The testing process for ReproGEN and CancerGEN is easy. People register for one or both test kits at JScreen.org. Their information is reviewed by our genetic counselors and a signed test order is obtained from their healthcare provider. A kit is shipped to their home, and they collect a saliva sample and mail it to the lab. About 3 weeks later, a genetic counselor contacts them to set up a telehealth appointment to discuss the results. Reports are shared with the individual and their healthcare provider.

What kind of genetic diseases does JScreen screen for?

The ReproGEN test includes over 200 diseases that could affect a couple’s future children. For most of these diseases, both parents have to carry a mutation in the same disease gene for their children to be at risk. Examples are cystic fibrosis, Tay-Sach disease and sickle cell disease. The CancerGEN test includes over 60 cancer susceptibility genes associated with hereditary risk for cancer. Examples are BRCA1 and BRCA2 – mutations in these two genes are associated with increased risks for breast, ovarian, prostate and pancreatic cancer.

Tell us about CancerGEN.

The CancerGEN test includes over 60 cancer susceptibility genes associated with hereditary risk for cancer.

Does your program screen for BRCA and other cancer-related genes?

Yes, JScreen’s CancerGEN test includes the BRCA1 and BRCA2 genes, and 61 other cancer-related genes.

Does health insurance cover genetic testing?

Many health insurance plans cover genetic testing, but coverage often depends on personal or family history of genetic disease. JScreen’s goal is to help ensure that everyone has access to testing, regardless of coverage. Everyone who registers for a JScreen test is asked to pay a very reasonable program fee which covers the testing and genetic counseling. The lab may bill insurance for the actual cost of testing, but JScreen participants never pay more than the program fee, regardless of whether their insurance pays. Financial assistance is available for anyone with financial need.

What is your mission for JScreen?

Awareness is really key. The more we can get the word out about the importance of screening, the more lives we can save!

JScreen is an independent, not-for-profit program focusing on carrier screening for genetic diseases common in the Jewish population. Both JScreen and DTC programs allow participants to screen at home, but JScreen’s program is led by medical professionals at an academic medical center and provides specialized genetic counseling follow-up by phone or video-conferencing for people who are identified as carriers. www.jscreen.org