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YU, JScreen offers free test for Jewish genetic diseases

Last year, marchers walked in Manhattan’s Celebrate Israel parade behind JScreen’s banner. (JScreen)
Last year, marchers walked in Manhattan’s Celebrate Israel parade behind JScreen’s banner. (JScreen)

 

One cheek swab is all it takes to be screened for more than 100 genetic diseases.

The saliva-based assay ordinarily costs $100 per person. But on Sunday, February 14, any Jewish man or woman 18 or older can get screened for free at Yeshiva University in Washington Heights in northern Manhattan. It’s courtesy of JScreen, a national nonprofit program specializing in carrier screening for genetic diseases common in all Jewish populations.

In addition to being tested, each participant will have the opportunity to speak with a licensed genetic counselor.

“We’re hoping to get hundreds of people screened,” said Rebecca Garber, a Stern College senior and co-president of Yeshiva University’s Student Medical Ethics Society. The society sponsors a genetic screening for YU students every year, but this is its first with JScreen and for the general public.

“The Medical Ethics Society has done groundbreaking work by providing genetic screenings in the past, but we want to increase our impact this year by expanding our reach to the greater Jewish community,” Ms. Garber said.

“Everyone should be tested, and we are fortunate enough to go to a school that satisfies this need for us. However, many of our peers do not have this opportunity readily available to them. We recognize this lack and hope to include as many people as possible.”

The timing of the student-run event, coinciding with the university’s hugely popular annual Seforim Sale of Jewish texts — and coincidentally also on Valentine’s Day — is likely to attract a sizeable number of men and women of marriageable age.

“It’s one of the biggest events our society has ever done,” Ms. Garber said. “We’re excited to bring the greater New York Jewish community the opportunity to get screened. Even getting one person screened can make a huge difference.”

According to JScreen, one in four Jews is a carrier for a Jewish genetic disease, and among Ashkenazi Jews there are nearly two times as many carriers as there are in the general population. The organization also reveals that 80 percent of babies with genetic diseases are born to parents with no known family history of that disease.

“Being a carrier of a genetic disease means that even though you and your partner do not show symptoms, you can still pass that disease to your child,” according to JScreen. “If you and your partner are both carriers of the same disease gene, each of your children has a 25% chance of being born with the disease itself.”

Yeshiva University’s rabbinic leaders released a unanimous endorsement of early genetic screening to help young couples plan for a healthy family.

“We believe that all students should undergo genetic testing before marriage, preferably before dating or entering into a serious relationship,” said Rabbi Kenneth Brander of Teaneck, vice president for university and community life at YU. “Testing gives students the knowledge to make informed decisions that can diminish pain and suffering within our community. We encourage students to get tested and to speak to a trained genetic counselor and a knowledgeable halachic authority about any questions.”

JScreen, headquartered in Atlanta at Emory University School of Medicine, is a collaboration among clinical geneticists, socially minded businesses and nonprofits.

“We have been partnering with colleges and Jewish organizations across the country to make screening convenient, affordable, and accessible,” JScreen’s spokeswoman, Hillary Kener, said. “It’s wonderful to be partnering with YU, as they are providing a valuable service to their students.”

She added that anyone who cannot get to the onsite screening can log onto www.Jscreen.org to obtain a kit for collecting the saliva sample at home. It can be delivered anywhere in the United States. The kit is sent to JScreen for DNA sequence analysis. “Everyone will be contacted by a licensed genetic counselor within a few weeks when their results are ready,” Ms. Kener said.

Ms. Garber, who is from Atlanta, discovered that JScreen founders Caroline and Randy Gold live near her family.

In August 2009, the Golds’ 18-month-old daughter was diagnosed with mucolipidosis type IV (ML4), a preventable Jewish genetic disease. Though the Golds had a genetic screening done before they married, they learned that they had been screened only for the most common eight diseases, and that there is no standard testing panel.

In response, the Golds founded Jewish Gene Screen to promote awareness among rabbis, doctors, and young couples about the need for Jewish genetic disease screening. They later partnered with Emory University School of Medicine to create JScreen.

Cystic fibrosis is the most common Jewish genetic disease, affecting one in 30 children. Spinal muscular atrophy, Gaucher disease, Tay-Sachs disease, Usher syndrome type 1, glycogen storage disease type 1a, familial dysautonomia, Canavan disease, Bloom syndrome, and Fanconi anemia are among the devastating conditions found in Jewish babies.

“Ultimately, we hope that the convenience and subsidized testing will make genetic screening an accessible reality for hundreds of people, benefiting not only the YU student body but the greater Jewish community,” said Ari Garfinkel, co-president of the YU Medical Ethics Society.

Screenings will be available from 2 to 6 p.m. February 14 on the 12th floor of YU’s Belfer Hall, 2495 Amsterdam Avenue.

To register, visit JScreen.org/college and select “YU/Stern” from the “how did you hear about JScreen” drop-down menu. Enter insurance information on step 2, and use coupon code “YU2016” on step 4. Walk-ins on the day of the event will be welcome, but pre-registration is encouraged.

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