These Tests Aren’t For Grades

By funding a day of genetic testing at Columbia/Barnard Hillel, UJA-Federation hopes to spur regular screening on the area’s college campuses. But there’s disagreement among doctors over who should pay for those tests.

by Doug Chandler
Special To The Jewish Week

Like many of her classmates at the Columbia University and Barnard College campuses, Lauren Carel considers
marriage, let alone the thought of having children, the furthest thing from her mind right now.
“Right now, I’m focused entirely on school,” said Carel, a 19-year-old freshman who, until a few weeks ago, was in the midst of classes, term papers and final exams at both Barnard College and the nearby Jewish Theological Seminary.
But that didn’t stop Carel, a double-major enrolled in both schools, from taking a simple blood test last month at the Columbia/Barnard Hillel. The test, for which more than 150 people signed up, screened students to determine their carrier status for up to nine genetic diseases. Those diseases, including Tay-Sachs, Bloom syndrome and

cystic fibrosis, are found at higher rates among certain groups, including Ashkenazi Jews, than for other members of the population.
Neither did her studies prevent Carel from helping to organize the day of screening on behalf of the Hillel chapter, where she’s a member. Offered at no cost to the students, the event received funding from UJA-Federation of New York — the first time federation had supported such a screening at one of the area’s college campuses.
Having already funded a communitywide screening in December, “we were interested in supporting a second opportunity for testing,” said Jennifer Ackerman, a planning executive with the federation’s Caring Commission. More specifically, she added, federation leaders wanted the event to take place at “a center of vibrant Jewish life” and “in a population that doesn’t have access to screening.”
The federation grant, which underwrote the cost of testing for up to 150 students, went to the Montefiore Medical Center, a federation agency, which, in turn, worked with the Human Genetics Lab at Jacobi Medical Center and the Victor Center for Jewish Genetic Diseases. The Victor Center, which provided genetics counseling to each of the students, is part of the Albert Einstein Medical Center in Philadelphia.
In funding the event, federation leaders also wanted to raise awareness among college students about Jewish genetic diseases, said Roberta Leiner, managing director of the Caring Commission. Funding is always limited, and there’s only so far federation can go in supporting screening initiatives, she said, but such events can have a long-range impact beyond those who are tested.
Federation’s concern arises from the medical statistics, which show that one in five Ashkenazi Jews who has received a screening turns out to be a carrier of at least one genetic disease. Couples in which only one partner is a carrier have little chance of giving birth to a sick child, but in cases where both partners are carriers, the odds of having a diseased baby rise to 25 percent, said Dr. Susan Klugman, director of reproductive genetics at Montefiore.
The campus screening conducted at Columbia/Barnard Hillel focused on a panel of nine disorders, including three that can be fatal within the early years of life: Tay-Sachs, Niemann-Pick disease and Canavan disease. The others are Bloom syndrome, cystic fibrosis, familial dysautonomia, Fanconi anemia, Gaucher disease and mucolipidosis type IV. (See story on a family living with ML4 on page TK.) The diseases cause a variety of serious health problems, including susceptibility to infection or cancer, muscle weakness and mental retardation.
Carriers of a genetic disorder are themselves healthy and unaffected by the disease — a fact emphasized by genetic counselors before each screening. But Klugman and others believe the best time to receive a screening is long before a pregnancy and, if possible, before a serious relationship — when you can examine the critical issues involved free of intense pressure.
Carel, the student at Barnard and JTS, agrees with that idea, saying she believes that early testing empowers students, allowing them to make their decisions in advance. “Better to know now, right before I’m seriously considering having children,” Carel said. “I can do research into possible options much more freely now than if I’m flustered and frustrated.”
The options for “at risk” couples, in which both partners are carriers, include prenatal diagnosis of the embryo, in-vitro fertilization, egg and sperm donations or adoption. Carriers who are still single can preclude a relationship with someone else who’s a carrier or, if the personal chemistry is right, begin a relationship and consider those options.
Last month’s screening at Columbia/Barnard Hillel is based on a model developed by the Victor Center, which has organized dozens of campus and communitywide screenings since it was founded in 2002. The screenings are always free of charge and funded by donors, said Dr. Adele Schneider, the center’s director, who added that similar testing by a commercial lab could run as high as $3,000.
Schneider identified only two other organizations in the country that are doing the same type of work the Victor Center does — namely, organizing regular screenings, raising funds for the events and providing the tests at either no cost or a reduced rate. Those are the Chicago Center for Jewish Genetic Disorders, a foundation of the Jewish federation in Chicago and the Jewish Genetic Diseases Center of Greater Phoenix, an independent group.
The field also includes Dor Yeshorim, a global organization that offers “closed” or confidential testing to Orthodox Jews. What that means is that the organization doesn’t provide results to any individuals, said its founder, Rabbi Joseph Ekstein of Brooklyn. Instead, it gives a PIN number to both members of a couple, who can call Dor Yeshorim, using that number, and learn whether “they’re compatible or not.”
But the Victor Center’s model isn’t the only one that exists and, according to two doctors interviewed by The Jewish Week, it may be based on a faulty premise. Schneider, for instance, said the reason her center organizes free screenings is because the record of health-insurance companies in covering those tests is spotty. The companies cover carrier screenings if the couple is having a baby or, perhaps, seriously considering the possibility, she said, but very rarely do they cover the test if a pregnancy is not involved.
The economics of campus testing is even more complicated, Schneider said, noting that students are covered by their parents’ health insurance or by rather basic, college-offered plans.
But Dr. Harry Ostrer, director of the Human Genetics Program at New York University’s School of Medicine, said the health system “by and large” does cover genetic screening for students. At the campus screenings conducted by his lab, including one at NYU’s Bronfman Center and two at Yeshiva University, private insurance, he said, paid for most of the tests.
“Quite frankly, I don’t think philanthropic funds should be used to underwrite screening” if private plans would cover the cost, Ostrer said. “I think there are better uses for philanthropic dollars.”
That view is shared by Dr. Stuart Ditcheck, medical director of the New York-based Jewish Genetic Disease Consortium and a pediatrician in Midwood. Whenever his office has submitted claims for carrier screenings, Ditcheck said, he’s found it “relatively uncommon to get a refusal.”
Neither is the subject of genetic screening without its ethical debates, said Rabbi Edward Reichman, a physician and associate professor of the philosophy and history of medicine at YU’s Albert Einstein Medical Center (not associated with Albert Einstein in Philadelphia).
Rabbi Reichman referred to the pace of technology, which has discovered scores of genetic disorders since the Jewish community wrestled with Tay-Sachs disease in the 1970s and ‘80s. “The fear,” he said, “is that more and more genetic diseases are going to be discovered” and doctors won’t know when to stop testing.
“You’re not going to have an individual without some sort of predisposition to some sort of condition,” Rabbi Reichman said. “Are you going to start adding [to the panel of tests] a predisposition to diabetes or a predisposition to high blood pressure?” Already, he noted, many doctors are screening for the two genes associated with breast cancer.
All that said, the rabbi suggested, he believes that carrier screening for Ashkenazi Jews of reproductive age is an imperative. “I wouldn’t say it’s inexcusable not to be tested,” he said, “but if you have the ability to get tested to prevent these horrific diseases, it’s unfortunate not to do so.”

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