(Last in a four-part series on genetic screening for Jews.)
More than 160 young Jewish adults pulled up their sleeves and gave blood samples at the Hillel Jewish University Center last week, making history as participants in the largest screening session for 17 identified Jewish genetic diseases ever to be held in the United States.
The screening, which was sponsored by the Pittsburgh Victor Center Partnership, and subsidized by a community grant, was the first in a series of three to be held in Pittsburgh over the next three years. In addition to the screenings, the Partnership is also sponsoring community education initiatives to increase awareness of the genetic diseases prevalent among Ashkenazi Jews.
The screenings will determine whether each of the 166 participants is a carrier for any of 17 genetic diseases common among Jews. This information is critical for family planning, because if two carriers for the same Jewish genetic disease have children, the couple have a 25 percent chance of conceiving a child affected by the disease.
In those cases, options such as adoption, in vitro fertilization and sperm or egg donation can then be considered.
Most of participants at the screening were students at Carnegie Mellon University and the University of Pittsburgh, and years away from thinking about family planning. Still, the students were eager to take advantage of the service.
“I think it’s an important cause,” said Becca Stern, a junior at Pitt who served on the student-run committee that marketed the screening and encouraged classmates to sign up. “I went to day school, and we learned there about the diseases. I knew I wanted to be tested, and I helped recruit others to be tested.”
Stern and the rest of the committee, chaired by Brooke Heyman, spread the word in Jewish fraternities and sororities, Jewish studies classes, and among various student groups, but faced a few hurdles in talking their peers into coming in for the test.
“The blood test was the biggest hurdle,” Stern said, noting many students’ aversion to needles. “Also, because it’s not pertinent to their lives right now, people are not talking about [getting tested for Jewish genetic diseases]. But we got people to sign up by explaining that it’s free now, and that it’s an expensive test. I just don’t see a point in not having it done.”
A half dozen genetic counselors sat face-to-face with the students, explaining the Ashkenazi propensity for certain genetic diseases, and the screening process, while several phlebotomists were busy drawing blood from the students who were already counseled. The screening ran from noon until 8 p.m., with six people scheduled every 15 minutes.
“Hearing about it through Hillel and from Brooke [Heyman] was enough to get me interested,” said Sam Mellits, a sophomore at Pitt. “I mentioned it to my mom, and she encouraged me to sign up for it. It wasn’t a bad experience at all.”
“There was no reason to wait,” added Stephanie Aaronson, another Pitt sophomore. “If you get screened now, you can plan a step ahead. Why wait until you’re pregnant or beginning to plan for a family? I just don’t see a reason not to do it. It takes five to 10 minutes, and it’s free.”
When not subsidized, and when not covered by insurance, testing for the full panel of Jewish genetic diseases runs about $4,000 a person.
Roughly 25 percent of the students who were screened last week had insurance that covered the tests, said Dodie Roskies, developer of the Pittsburgh Victor Center Partnership project. The tests for the remaining students were subsidized by the community grant.
Roskies’ aim is to spread the word to the community about the importance of screening for these diseases. As part of the campaign, she has been speaking to area rabbis, encouraging them to get information to their congregants.
Rabbi Yaier Lehrer of Adat Shalom near Fox Chapel came to last week’s screening to speak to genetic counselors for tips on what to say to his congregation.
“I’m planning to speak to the congregation as part of some overall programming,” he said. “I’m going to try to get a critical mass, and put out materials for people to see.”
Lehrer said he also counsels young couples in his congregation about the importance of pre-conception screening before they are married.
Grant funding will be available to screen 300 people at the next Pittsburgh screening, which will be held in late 2011. Four hundred and fifty people will be screened in 2012.
But the ultimate goal, according to Roskies, is to get insurers to universally cover pre-conception screening for these diseases, rather than to rely on community dollars.
“I’m hoping that eventually, we’ll have coverage for all these diseases,” she said, noting the importance of encouraging people to talk about the issue to community groups, and persuading employers to seek the benefit from insurers.
(Toby Tabachnick can be reached at firstname.lastname@example.org.)