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