Major gift to genetics center reinforces importance of carrier screening

The Center for Jewish Genetics will increase its outreach throughout the Jewish community in the coming months to expand and enhance public awareness of often fatal genetic diseases that have affected Ashkenazi Jews for centuries. This initiative, which is funded by a major gift from the Harvey L. Miller Family Foundation, will more than double the number of subsidized carrier screenings performed by the Center over an 18-month period.

“This grant will allow the Center to provide more than 600 screenings to young people in the Chicago area over the next year and a half, up from 215 during the last 12 months,” said Karen Litwack, director of the Center. She also spoke of the need to reach young Jews of all affiliations, including those who might only be exposed to this information through their health care providers. “It is imperative that we reach all segments of our community to persuade them that they are at risk irrespective of their day-to-day cultural and/or religious identity.”

Approximately 1 in 4 individuals of Ashkenazi Jewish descent are carriers of genetic mutations for one of 19 known genetic disorders with higher incidence in Jewish populations, including Tay-Sachs disease, Gaucher disease and familial dysautonomia. Carriers of disease-causing mutations are healthy, but if two carriers of the same disorder have children, each pregnancy has a 1 in 4 chance of producing an affected child. Many of these disorders are life-shortening. Individuals of Sephardic and Mizrahi descent may also be at risk for other sets of disorders for which screening may be appropriate.

A simple blood test can determine whether one is a carrier, and carrier couples can still have healthy children, which is why educating the community about the need for screening is so vital. Carrier testing has a proven track record, beginning in the 1970s, when the gene for Tay-Sachs disease was identified. Thanks to community screening efforts like the Center’s, the number of Jewish children born affected by Tay-Sachs has dropped to almost zero. By raising awareness of the need for carrier screening, the Center also fosters more testing through doctors’ offices and insurance plans, further normalizing screening and its benefits.

“These diseases, and the heartbreak they can cause, are preventable,” Litwack said. “With help from the Miller Family Foundation, we can bring that message to more people than ever before.”

The Center for Jewish Genetics was founded in 1999 as the Chicago Center for Jewish Genetic Disorders. It is a cooperative effort of the Jewish Federation of Metropolitan Chicago/Jewish United Fund and the Ann & Robert H. Lurie Children’s Hospital of Chicago. The Center currently provides testing and genetic counseling at education and screening programs in Chicago and the suburbs five times a year. Registration for spring programs in February and April will open on Dec. 17.

Visit the Center online at www.jewishgenetics.org to learn more about carrier screening, hereditary cancers and other Jewish genetic health concerns, or contact Karen Litwack at KarenLitwack@juf.org or (312) 357-4917.

Esther Bergdahl is the Senior Program Associate of the Center for Jewish Genetics.