While Jewish family planning typically includes finding a welcoming community or reputable Hebrew school, one non-profit program hopes more couples will consider genetic screening a step in building a healthy Jewish family.
J Screen, an initiative based out of Emory University in Atlanta, is an education and carrier screening program that provides genetic screening kits and counseling to couples nationwide. J Screen was founded in September 2013 by geneticists and genetic counselors with the goal of making Jewish genetic screening more accessible after a study found that 76 percent of Jews of childbearing age had not been screened or were unfamiliar with screening
“We would like that number to be as close to zero as possible, so we decided to eliminate the barriers as to why people weren’t getting screened,” said Hillary Kener, J Screen’s outreach coordinator. “We decided to form this program around convenience and ease of access. We go to communities around the U.S. and try to tap into young demographics.”
A common concern regarding genetic testing is the cost; according to Kener, a kit costs, “an upward of a few thousand dollars.” However, J Screen uses the majority of its funding to make kits affordable for couples interested in being screened.
“Screening is only 99 dollars with insurance,” Kener said. “Being able to offer it for $99 is pretty amazing. It helps make it more affordable for everybody.”
Other barriers between the Jewish community and genetic screening include a fear of drawing blood, as well as convenience, according to Kener. After receiving payment and the appropriate consent forms, J Screen will mail a saliva kit to any address in the U.S. The testing process involves inserting saliva into a tube and mailing the kit to a lab. J Screen uses the sequencing screening method to test DNA for diseases that are more commonly found in those of Ashkenazi, Sephardic, and Mizrahi descent, compared to other backgrounds.
“We do offer screenings so we screen for 87 diseases, 40 of which are more common in people with Jewish ancestry,” Kener said. “The remaining are common in the general population, regardless of Jewish ancestry.”
The diseases more commonly found in those with a Jewish background are recessive.
“Some of the ones you might have heard of are Tay-Sachs disease, cystic fibrosis, or familial dysautonomia,” Kener said. “They’re all extremely devastating diseases. They range from severe to lethal but we have the ability to make sure that you don’t pass it on to your kids and the way that you can do that is by screening.”
About one in four people is a carrier of one of the 87 diseases, according to Kener.
“[If you are a carrier] that doesn’t mean you have it,” Kener said. “That means you carry a mutation that if your partner, if you eventually have kids with, is also a carrier, then you’re at risk to pass it on to your child. The key to screening is to get screened before you have kids, for men and women. We can help educate them and hopefully prevent some of these diseases in their future children.”
While several Jewish genetic screening initiatives exist worldwide, Kener says J Screen is unique because both the kits and the proper education and counseling can reach anyone.
“Regardless of where you live in the United States, you can get screened,” Kener said. “If you’re in a population of 200 in Wyoming or you’re in a population of one million in New York, you have the same access. Our genetic counselors will call you regardless of where you are to explain what the results mean. I think that’s the best part of the program because it allows the patients to ask questions and understand what it means to be a carrier and it gives them a peace of mind.”
While J Screen typically works with synagogues, Jewish community centers and Jewish organizations, college students also assist in spreading the word about testing. Kener stressed that even college students who are years away from family planning should be screened.
“It’s never too early to get screened, even for people who aren’t interested in having kids in the next few years,” Kener said. “It’s never too early to educate yourself and take responsibility for your future family. A lot of college students have gotten involved on their campuses to help spread the word.”
Click here for more information about how to bring Jewish genetic testing to your campus.
Abby Seitz is a student at Columbia College in Chicago.
