CJG Blog

Center for Jewish Genetics blog

Genetic Shabbat: Share Your Family Health History

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Sample Bulletin Article for Genetic Shabbat

Every family has its stories, and Jewish families tend to be very good at sharing them. How we got from there to here. How branches of the family came together – or were torn apart. How we learned from those who came before us. 

Each week on Shabbat, rabbis have the opportunity to tell stories about our collective history and share lessons for the future as we relate the Torah portion to modern life. Some weeks, of course, are a little more difficult than others. Parshiyot Tazria and Metzorah, for instance, are about leprosy and disease. Not the most comfortable topics to discuss. 

Yet it is the sometimes-uncomfortable stories of illness and disease that can provide some of the most valuable information for our own health and the health of families. Diseases may run in families for different reasons, yet often arise due to our shared genetic heritage not just as family members, but as persons from a particular ethnicity or whose ancestors came from specific parts of the world. 

Family health history has particular importance for persons of Jewish descent. Several recessive genetic disorders – including Tay-Sachs disease, Gaucher disease, and Cystic Fibrosis – are much more common among Jews. But because these diseases only occur when two carriers have a child together, they rarely turn up in family health history. 

In contrast, other diseases with a genetic component often show up in family health history. Of particular concern to Jewish families are cancers related to mutations in the BRCA genes, which can greatly increase the risk for several cancers in both women and men. Sharing family health history can help current generations identify shared risks and help individual family members get the education and preventative care they need. 

As families gather on Shabbat and other occasions, they have an opportunity to share and ask questions of one another to piece together health history. Make this Shabbat a Genetic Shabbat. Discuss your health information and ask questions of other family members. Share this information with each other and, ultimately, with your healthcare provider, who can help you interpret it and provide guidance to protect your family.

For family health history tools and to learn more about Jewish genetic health, visit JewishGenetics.org or contact the Norton & Elaine Sarnoff Center for Jewish Genetics at (312) 357-4718 or jewishgeneticsctr@juf.org

Community Needs Assessment Update

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Speech Bubble - Tell Us

By Becca Bakal, MPH

Last summer, I embarked on a yearlong project to hear from Jewish individuals and interfaith couples about what they know about Jewish genetics topics and what they would be interested in learning. The ultimate goal of the project is to create a more-informed community by leveraging what people already know about health and genetics and providing educational programs to fill in the gaps. And we’re still looking for people to lend their voices to this process! I’m conducting interviews through the end of March, and I am especially looking to speak with:

  • Dads of all ages
  • Interfaith couples, including non-Jewish partners
  • Individuals in their 40s and 50s
  • People who don’t regularly attend a synagogue, JCC, or other Jewish community events

Interviews last 30 minutes, and you don’t need any prior knowledge to participate. I can meet participants at their convenience for coffee on the Sarnoff Center. If you’re interested in participating, please fill out this survey or contact me at RebeccaBakal@juf.org or 312-357-4717.

Thanks to everyone who has donated their time so far, we have gathered information to help us develop educational resources and programming that is tailored to what community members want to know. We’ll be sharing the results of the needs assessment this summer, but here is a taste of what’s to come. 

By location:

This Sarnoff Center’s first Community Needs Assessment has taken me all over Illinois: from Chicago to Champaign-Urbana, Homewood to Highland Park, and much further. Along the way, I’ve heard from folks at all stages of their lives, including individuals who have been personally affected by Jewish genetic disorders and many who have not.  

By the numbers:

  • 106 surveys collected from participants aged 16 to 83 residing in 44 zip codes
  • 29 hoursof interview & focus group recordings
  • Interviews in 27 coffee shops around Chicagoland


Some of the themes of the needs assessment so far include:

  • People sometimes avoid learning about genetics because they don’t feel that there are actions they can take to reduce their risk
  • Introducing information early can plant the seed for later health actions
  • People want to learn about: health actions they can take related to their genetic information, differences between types of genetic testing, and how to navigate questions about insurance and genetics
  • Multiple types of touchpoints are necessary to reach people across the lifespan

Stay tuned for comprehensive results of the needs assessment this summer!


How to Lend a Hand This Rare Disease Day

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Rare Disease Day – which occurs every year on the last day of February– is an undoubtedly important time to raise awareness about rare diseases. But it’s also a bit of a misnomer. Rare diseases aren’t quite as "rare" as we think. While each of these unrelated disorders affects a relatively small group of people, collectively 1 in 10 Americans is living with a rare disease.1 

In the Jewish community, many people have been impacted by Gaucher disease, an inherited lysosomal storage disorder. Though rare, Gaucher is nearly 90 times more common among Ashkenazi Jews than in the general population.2 Gaucher disease ranges in severity: some types are milder and treatable, others are severe or even fatal.    

Almost 10 years ago, a team in Israel developed an innovative Gaucher treatment, using plant cells to improve the speed and safety of drug production. The new therapy has benefitted patients around the world and was the first prescription medication to receive kosher certification. While this drug shows incredible promise, we still have a long way to go – for patients living with Gaucher and with other rare diseases. Currently only 5% of all rare diseases have an FDA-approved treatment.3 

Want to take action for those affected by rare diseases? Here are a few ideas to get involved. 

Advocate for rare disease treatments
Many patients living with rare diseases have a long diagnostic odyssey. Then, adding insult to injury, they may receive a diagnosis only to learn there are no available treatments. In attempt to accelerate drug development for rare diseases, congress passed the Orphan Drug Act in 1983 (with mixed success). 

More recently, bipartisan legislation known as the OPEN ACT (standing for Orphan Product Extensions Now – Accelerating Cures and Treatments) was introduced to incentivize biopharmaceutical companies to re-purpose existing therapies to treat rare diseases. It passed in the House in July 2015 but has not been signed into law, despite being reintroduced in 2017. Learn more about the OPEN ACT here

Participate in research
Participating in medical research is another way to help improve diagnostic processes and accelerate treatment options. To learn more about research for rare diseases, visit the Rare Diseases Clinical Network Research Network website. Discuss what you learn about with your physician, who can help you determine whether participating in research is appropriate for you. New research studies are constantly in development, so check in periodically to learn about cutting edge research. For example, families affected by Gaucher disease may be eligible for a study exploring the genetic link between Gaucher and Parkinson’s disease supported the Michael J. Fox Foundation.

Talk to a genetic counselor
About 80% of all rare diseases are caused by genetic changes.4 If you or someone you know is affected by a rare disease, connect with a genetic counselor to learn more about genetics and whether genetic testing is appropriate. As information about the genetics of rare disease advances, we hope to better understand how to help future patients with these diseases. The Sarnoff Center’s genetic counselor can answer questions and provide suggestions for other resources. Or you can locate a genetic counselor in your area through the National Society of Genetic Counselors.

Photo credit: National Center for Advancing Translational Science Flickr


1. Global Genes

2. National Gaucher Foundation

3. EveryLife Foundation for Rare Diseases

4. Global Genes



It Turns Out Carrier Screening is For Me (And You!)

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By Shira Gerstein, Sarnoff Center Associate Board Member

While my classmates were gathered in the assembly room to get their blood drawn for Jewish carrier testing my senior year of high school, I hung out in the hallway. It’s not that I’m squeamish at the sight of blood. Rather, I superciliously (and falsely, I now know) thought that carrier screening was not for me. After all, I’m only half Jewish.

During my senior year of college, I learned from the Center for Jewish Genetics that I could have a 50% chance of being a carrier for a Jewish genetic disease if my father was a carrier and that one in four Ashkenazi Jews were carriers. Since I knew I wanted to marry someone Jewish, I decided to get screened as a precaution. However, as I had smugly anticipated, my test results came back negative. After all, I’m only half Jewish. 

While shadowing genetic counselors after college, I saw numerous occasions where genetic counselors took significance with patients’ distant Jewish ancestry. I wondered why it mattered if a patient is only one-sixteenth Jewish. I’m not a carrier and after all, I’m only half Jewish.

Then one of my siblings did an extensive carrier screening test. As I had arrogantly anticipated, she was not a carrier for a Jewish genetic disease. But to my surprise, she was found to be a carrier of a genetic disease that is found predominantly among the Amish. After researching our family history, we discovered that our grandmother’s grandfather was Amish! Perhaps, carrier screening is for me. After all, I’m one-sixteenth Amish and half Jewish.

The moral of the story? Even having just one Jewish grandparent or great-grandparent is enough to increase a person’s risk of carrying a Jewish genetic disorder.  Furthermore, while Jewish genetic disorders appear more often in individuals of Jewish descent, anyone can be a carrier of these conditions. This also means that someone with predominantly Jewish ancestry can still be a carrier of "non-Jewish" disorders. 

The Norton & Elaine Sarnoff Center offers an affordable, accessible carrier screening program for Jewish and interfaith couples. The online, on-demand model doesn’t even require a blood draw! For more information, visit jewishgenetics.org.


Affordable, Accessible Genetic Screening in Illinois

Our affordable, accessible carrier screening program uses advanced technology to provide comprehensive screening for Jewish and interfaith couples. Visit our Get Screened page to learn more and register.


Do You Know What's In Your Genes?

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders . Be sure to check with your relatives for warning signs and assess your risk for hereditary cancers!

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you? Click here to learn more !