There’s a lot on your plate when you’re getting married. If the push to get a genetic screening feels like just one more thing, the organizations doing the screening can offer you many reasons you should feel otherwise.
The Jewish population, especially those of Ashkenazi (Eastern European) heritage, have a predilection for a number of genetic disorders and genetic screening can help prevent passing those genes to your future kids.
“The only way to know if you’re a carrier is to get tested or have an affected child,” said Hillary Kener, assistant director of outreach and marketing for JScreen, the Jewish genetic testing company. “And that’s what we’re trying to prevent.”
Take Tay Sachs, the fatal genetic disease. About one in 30 Jews is a carrier for it, compared to a general population rate of one in 250. In the 1970s, there was a push to start screening Jewish couples who wanted to have children and the grassroots action got results. The incidence of Tay Sachs went down by 95 percent.
The JScreen test — which consists of spitting in a tube and sending it in a prepaid envelope back to JScreen — screens for a panel of more than 200 diseases. Some, like Tay Sachs and Gaucher disease, have a higher incidence rate in Jews while others, like Duchenne muscular dystrophy and Salla disease, do not have a higher rate in Jews, but are included in the screening.
The other Jewish organization that does genetic screening is Dor Yeshorim. The organization’s policy is to test for only “recessive diseases where pain and suffering is avoidable,” according to its website, which means it likely tests for fewer diseases than JScreen. Dor Yeshorim said in an email that it does not speak to the media.
Recessive means that a child can only be affected if both parents are a carrier — a 25 percent chance. Carriers don’t have any symptoms themselves, since the disease needs both sets of the carrier genes to take effect.
Dor Yeshorim’s screening is a part of matchmaking. Those who are screened are given an ID number and when they meet their potential spouse, both will send in their numbers to find out if they are a compatible match — that is, they are not carriers for the same diseases. Those who find they are both carriers of a disease will be offered genetic
counseling by Dor Yeshorim.
JScreen’s philosophy is “knowledge is power,” said Kener. JScreen gives their clients the full results and offers them genetic counseling.
Kener said that couples who are carriers of the same disease don’t have to give up on having a family.
“Thankfully, in 2018, there’s so many more options to help couples have healthy babies,” she said, pointing to the possibility of using donated eggs and in vitro fertilization with pre-implantation genetic diagnosis (doctors can genetically screen embryos for the specific diseases).
And JScreen is trying to find the young people both before and after they’re coupled. They partner with synagogues, Hillels and young professional groups to set up pop-up screening booths.
“Newly engaged or married couples are a really big group,” Kener said, because they’re the most likely to be thinking about having children in the near future. Many rabbis will also hand out JScreen materials to couples in pre-marital counseling. “We’re really trying to become a household name,” Kener said. “Like, ‘Oh, I got JScreened.’”
And it’s not just Jewish heterosexual couples who should get screened, she emphasized. Interfaith and
same-sex couples should as well, since anyone can be a carrier.
JScreen has also enlisted the help of the best pushers of all — Jewish parents and grandparents. The organization heard from a number of parents and grandparents asking if they could buy a test for their child or grandchild. So, JScreen set up a way to gift the test to someone online.
“It’s important to be proactive when it comes to the health of our future families,” Kener said. “It takes 10 minutes. There’s no reason not to get tested.”