At the Pennsylvania summer camp where she was working as a counselor, Shoshana Rosen got tested for nine Jewish genetic diseases and found out she was a carrier of cystic fibrosis. Thanks to the Victor Center for Jewish Genetic Diseases, the tests she received were free of charge. Had she gone to a private laboratory, it would have cost around $2,000.
“I was upset because my sisters didn’t have access to the tests, since they are so expensive,” Rosen told the Forward. “I just felt privileged to have the opportunity to know that I am a carrier.”
Eager to make free testing more widely available, Rosen, 23, got in touch with the Victor Center at Albert Einstein Medical Center in Philadelphia and started raising funds to bring screenings to the University of Pittsburgh, where she was a student. In December 2006, 187 fellow Jewish students were tested for free. Among them was Rosen’s boyfriend, who found out he was a carrier of a genetic disease other than cystic fibrosis. This means that the young couple is genetically “compatible.”
Like Rosen and her boyfriend, a growing number of American students from Ashkenazic Jewish families are entering adult life with detailed information about their genetic makeup. Since 2005, a variety of organizations — including private foundations, a biotech company and student associations — have launched awareness campaigns and screenings at universities in New York, Arizona, California, Massachusetts and Pennsylvania.
“On campus, it has become the thing to do,” Victor Center director Adele Schneider said. The Victor Center has tested more than 500 students in Pennsylvania since 2000. “We need to inform students before they choose partners,” Schneider said. “Most of the time, couples find out when the woman is pregnant.”
For a couple expecting a child, learning that both parents are carriers of the same disease can have devastating consequences. This, Schneider said, is why early screening is so vital. If done at the right time, “knowing that they are carriers has no direct impact on their life,” she said. Couples who are both carriers for the same genetic disease have a 25% chance of giving birth to a sick child. Although insurance plans don’t always cover testing before pregnancy, being informed early gives couples time to consider their options. Potential parents who are carriers of the same disease can have a prenatal diagnosis of the embryo, or try in vitro fertilization, adoption, or egg and sperm donations.
For many religiously observant young adults, knowing that they are both carriers can lead to the end of a relationship. Dor Yeshorim, a not-for-profit that offers genetic testing in Orthodox Jewish communities, started screening students at Yeshiva University in New York in 2005. The organization strongly advises separation for young adults who are genetically incompatible. “I know people who waited to get tested after the relationship got serious,” said Yonah Bardos, president of Y.U.’s Student Medical Ethics Society. “It is a lot of heartache.”
Recently, a letter signed by 17 prominent rabbis urged Y.U. students to get tested “preferably before dating.” In two years, more than 200 students were tested on campus. Screenings will now be available every year for $150.
With tests costing between $30,000 and $50,000 per campus screening, outside funding sources have proved crucial. The Victor Center has been able to offer free tests thanks to large donations from philanthropists, mainly the Victor and Kaiserman families, and with additional fundraising by student groups. The center expanded from Pennsylvania to Massachusetts last year, and soon it will open a branch in Florida.
In 2005, Andi and Sherman Minkoff created the Greater Phoenix Jewish Genetic Diseases Project. They have held informational conferences about genetics during Hillel and Chabad events at Arizona State University. They have not managed, however, to attract a significant number of students to get tested at the local Jewish Community Council, where the Minkoffs offered $50 tests.
Campus programs have not concentrated on testing alone; they’ve also begun to provide enough information and counseling so that students don’t panic. Gary Frohlich, who is employed by the biotech company Genzyme to raise awareness about Jewish genetic diseases, has gone to more than a dozen universities in California to give a speech called “Our Health, Our Heritage.” He stressed that students need time to decide if they want to have the test done. “You can’t make the decision after a 45-minute talk,” he said.
Similarly, the Victor Center staff is careful to leave ample time — usually months — for reflection between the information session and the actual testing event. “Everyone I know who found out that they were carriers were completely fine when they received this information,” Rosen said. “Anyone who was tested was made completely aware of what they were being tested for, and the implications of finding out one is a carrier.”
This campus movement is still in its early years: Jewish genetic diseases are currently not a priority in the Jewish community, according to Schneider. But she is confident that things will change because this new generation knows more about genetics.
“Thousands of students are now informed about these diseases, and they will spread their knowledge around the country,” she said. “We are educating the Jewish leaders of the future.”