An innovative, Atlanta-based screening program for Jewish genetic diseases has expanded its geographic scope and medical capabilities since it was founded a year and a half ago — and, with the help of one supporter from Long Island, recently reached nearly 200 Jewish college students on one campus in one day.
JScreen, a not-for-profit under the auspices of Emory University School of Medicine’s Department of Human Genetics, originally offered at-home screening, using a saliva sample, for 19 Jewish hereditary diseases. Originally, it centered its work in Georgia, Florida, Virginia, Maryland, North and South Carolina and the District of Columbia.
Today, after an extensive social media campaign (facebook.com/myJScreen; twitter.com/myJScreen; youtube.com/myJScreen) and publicity through a wide range of Jewish organizations, JScreen has tested men and women for 42 Jewish genetic diseases (and 45 other ones) in 47 states, according to Hillary Kener, the program’s national outreach director.
“That’s a huge leap,” Kener said. “It’s because we’re making it so easy.
“Well over a thousand” people have taken part in the screening program, Kener said.
In JScreen’s program, a patient who is pregnant or thinking of having children needn’t go to a laboratory or have a blood sample taken. Testing of saliva that is sent in a kit provided by the program “is performed by a certified laboratory and results are reviewed and reported to participants by genetic counselors,” the JScreen website states. “For individuals with medical insurance, the cost of screening will be $99, and is often much lower, depending on insurance.”
For people without insurance, the self-pay rate for the screening is $999; the program can arrange financial assistance.
Private follow-up consultations — in which such options as in vitro fertilization, donated sperm or egg, or adoption are discussed — can take place in teleconferences with JScreen specialists.
“The time factor” of people who live far away from a testing facility or find it difficult to fit an in-person test in a busy schedule influences participation in JScreen, said Rebecca Somach, a native of Jericho, L.I., who arranged for more than 170 students to be tested this March at the University of Pennsylvania, where the junior is studying the biological basis of behavior.
“We wanted to make it an event,” said Somach, who heard about JScreen last year and has helped promote it among fellow students. Most of the participating students are single; they took part with an eye to the day when they want to start a family.
Almost 80 percent of babies with a genetic disease are born to parents with no known family history, according to JScreen statistics; for Ashkenazi Jews, the risk for genetic disease is higher than for the general population.
Providing a saliva sample in a mail-in kit is “an unbelievable convenience,” Somach said. The results come within three weeks.
From an Ashkenazi background, she was among the students who took part in the screening at Penn Hillel; she said she knows of no history of Jewish genetic diseases in her family.
"Screening results are extremely accurate givrn new state-of-the-art sequencing technology," Kener said.
“No test is 100 percent reliable,” Somach said, adding that she is satisfied enough to recommend JScreen to her friends and family. If anyone she knows is ready to have children, she said, “I would definitely encourage them.”