Planning for your future from home

On-demand carrier screening for Jewish genetic disorders

Sarnoff image

This spring, patients and health care providers canceled doctor's appointments, dental cleanings, and even surgeries to support physical distancing efforts to slow the spread of COVID-19. But increasingly, organizations and providers embrace telemedicine and other types of remote access to continue serving patients even when their offices are closed to non-emergency visits.

COVID-19 or not, life goes on, and for many young adults in our community, that means planning for their future healthy families. And for Jewish and interfaith couples, genetic disorder carrier screening is an important part of that planning process.

The screening program offered by the Norton & Elaine Sarnoff Center for Jewish Genetics uses an on-demand model that participants complete from home, which in virtually all cases, eliminates the need for an in-person appointment.

"When we switched to an on-demand model in 2015, we weren't planning for a pandemic," explains Jason Rothstein, executive director of the Sarnoff Center. "But we feel fortunate that our service provides some stability and security for people who need it during this difficult time."

Carrier screening is a type of genetic test to evaluate a person's risk of passing genetic disorders to children. Many couples seek this screening before conception or during pregnancy. Individuals of Jewish ancestry have an increased risk of passing on certain disorders. The American College of Obstetricians and Gynecologists encourages all parents-to-be to consider carrier screening for a few conditions and recommends additional screening for individuals of Jewish ancestry.

Individuals and couples typically have a few options to seek out screening. They can ask their primary care provider about carrier screening when they are planning for a family, they can make an appointment with a genetic counselor, or in many cases they can seek out a community-based carrier screening program. These programs are designed to encourage carrier screening before pregnancy by simplifying the process and subsidizing the cost.

Carrier screening has been available for almost 50 years, but has changed dramatically over that period. Many individuals who went through carrier screening for Jewish genetic conditions in past decades attended in-person educational programs, had their blood drawn, and learned about their risk for only a handful of conditions. Now, many carrier screening panels can be administered remotely and include 200+ conditions, including several dozen more common in people of Jewish descent.

Even though individuals of Jewish ancestry are more likely to pass on certain disorders, anyone can be at risk to pass on any disorder. Carrier screening can be an important part of family planning for interfaith couples and couples with just some Jewish ancestry.

The Sarnoff Center program is available to individuals of Jewish ancestry living in Illinois and their partners, whether Jewish or not. It is affordable, accessible, and can be completed from home.

  • The Sarnoff Center's carrier screening process is straightforward:
  • Register online and pay a small program fee. (Waivers may be granted in the case of financial hardship).
    • Complete an online education course to prepare for screening.
    • Fill out and return an intake form to Insight Medical Genetics to register for the test itself.
    • Insight Medical Genetics will contact participants if they require any additional information. Once their information is complete, they will send a sample collection kit.
    • Provide a saliva sample using the instructions included in the kit and return it to Insight Medical Genetics.
    • In 2-3 weeks, a genetic counselor from Insight Medical Genetics will call with test results and provide additional follow-up counseling if needed.

    The Sarnoff Center offers an opt-in payment assistance program for the cost of the test.

    For more information, visit jewishgenetics.org.

    Becca Bakal, MPH is the program manager of health education at the Norton & Elaine Sarnoff Center for Jewish Genetics.

    The Sarnoff Center is a supporting foundation of the Jewish United Fund, and is supported in part by the Michael Reese Health Trust.

     



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