By Carol Guzman

This December, the Norton & Elaine Sarnoff Center for Jewish Genetics had the opportunity to share our mission and work at the Union for Reform Judaism Biennial conference. More than 5,000 clergy members, leaders, and exhibitors from across the country came together to learn, network, worship and make decisions about the policies of the Reform movement. The URJ Biennial took place in Chicago and the Jewish United Fund of Metropolitan Chicago served as a Gold Sponsor for this year’s conference.

The Sarnoff Center exhibited at the Kikar area right outside of the exhibition hall with 150 other organizations. Sarnoff Center staff switched shifts throughout the conference, connecting with many attendees from all around the world.  By the end of the weekend 26 organizations in 14 different states requested additional Sarnoff Center educational materials that they plan to share with their respective communities.

Educating the Jewish community about Jewish genetic health is our main mission, so we couldn’t help but bring along some of our print materials and awesome swag. Throughout the conference we distributed:

• 193 lunch bags
• 50 water bottles
• 150 Hereditary Cancer Brochures
• 125 Interfaith Brochures
• 127 Jewish Genetic Disorder Brochures
• 196 lip balms
• 67 fun sized chocolate bars

Our staff connected with various organizations that seek to provide services to the people in the Jewish community and we had the pleasure of reconnecting with partner organizations who also focus on genetic health, such as the Victor Center. We are excited to see what our new connections from the URJ will bring as we continue to strive to advocate for genetic health in the Jewish community!

By: Carol Guzman

Warning: Light spoilers for "Almost Family" ahead.

More than 26 million people have taken consumer DNA tests worldwide, making it easier than ever to uncover familial information. Finding a cousin or an uncle twice removed might be fun, but what if your results show you that your biological parent is not the person you expected? A new show highlights this rare but disturbing reality that genetic testing can bring to light. 

In the Fox TV series “Almost Family,” Julia Bechley’s world is turned upside-down after her father, Leon, a renowned fertility specialist, is publicly accused of using his own sperm to impregnate patients at his clinic. Julia offers free DNA paternity testing to anyone that suspects Leon to be their father and finds out she has a least 100 half siblings. Julia begins to rekindle a bond with two half-sisters: Edie, a criminal-defense attorney representing Leon, and Roxy, a retired Olympic gymnast. Some other half siblings include Julia’s former romantic partner, an Orthodox Jewish woman, and a gay man who is starting to consider beginning his own family.  

Rather than focusing on Leon Bechley’ hideous actions, the show focuses on the intersection of genetics and family. Does sharing genetic material with someone else automatically garner a deeper familial relationship? While other half siblings are weaved within the series, each identified by nervously tapping their teeth, a tick Julia, Edie and Roxy all share, they all reach out to Julia asking for various information. One sibling asks for Leon’s family health history, another pleads for stories of his past, but rarely does anyone demands answers or showcases anger. While Almost Family may not treat this subject matter with finesse, Julia does understand that her half siblings “…had their lives disrupted, changed by the miracle of DNA testing.” 

While “Almost Family” isn’t based on a true story, it does raise some hard questions that we will only continue to struggle with as genetic testing and technologies advance and become more accessible. As more and more American’s take direct to consumer test to find long lost family members, they are unknowingly making it easier for law enforcement and government agencies to use their genetic material against them and their relatives.   

In addition to discovering new family members, direct to consumer test’s health-related insights could reveal an increased risk for diseases and certain cancers. Take 23andMe, their Health Risk Test claims to screening for a gene that increases risk for Alzheimer’s disease, which is not preventable and currently has no known treatment. Should you be screened for a disease with no preventable or treatable action and fear a disease that might not emerge?  Should you tell your other family members, even those found through direct to consumer tests, about this newfound information?  

The age of genetic information has come, and it might bring about just a little more information than we are ready to handle.   

By Carol Guzman

In honor of November as Family Health History month, the Sarnoff Center and partner organizations are sharing information about certain health conditions that may run in families, and how to talk to your relatives about those conditions. You can find previous posts in this series here. 

Talking about your family health history at the Thanksgiving table is a vital tool when it comes to preventing hereditary cancers and passing on genetic diseases. However, other diseases, such as recessive genetic disorders, may go unnoticed and can be passed on generation to generation without directly affecting a family member. That’s because an individual must inherit two copies of the mutated gene, one from each parent, to acquire the recessive disease. If two people -- each with one mutated copy of the same gene -- have a child together, there is a 50% chance that their child will also be a carrier and not exhibit symptoms, a 25% change that the child will have no mutated copies of the gene, and a 25% chance that the child will be affected with the disorder. Most Jewish genetic disorders are inherited in this autosomal recessive fashion. 

For example, Canavan disease is one of many Jewish genetic disorders that can hide in families; this disease renders the nerve cells in the brain unable to send and receive messages. Although infants may appear normal at birth, by 3 to 6 months they lack muscle tone and head control making them appear ‘floppy’. 

Orren Alperstein and Seth Gelblum, founders of Canavan Foundation for the Prevention & Cure of Canavan Disease, did not have family members affected with Canavan disease and found out that they were carriers once their child was diagnosed with the fatal disease. At the time, carrier screening for Jewish genetic disorders was not available. Instead, they learned from their doctor that their second daughter, Morgan, would not reach certain developmental milestones such as walking, talking, or holding up her head up on her own. Orren and Seth continue to advocate for preconception carrier screening and hope to serve as an example that carrier couples can build healthy families.

If you or someone in your family is planning to start their own family, it is important to know that:

• Everyone carries 6-8 changes in their genes, no matter their ethnic background. While most of these changes are harmless, some can cause sever genetic disorders
• Furthermore, 80% of babies with genetic disorders are born to parents with no known family history of that disease
• Talking to a genetic counselor about your and your partner’s ethnicity and family health history can help them direct you to a panel that is best for you
• If you do know that you have a family history of a certain recessive condition, it’s important to mention that to doctor and see a genetic counselor when family planning
• The Norton & Elaine Sarnoff Center for Jewish Genetics has a convenient online, on-demand carrier screening program that is accessible to all Jewish and interfaith couples in Illinois
• Ideally, couples should get carrier screening prior to pregnancy to understand their risks and options
• If both you and your partner are carriers for the same disease, a genetic counselor can walk you through the various options available for you to build a health family

Family health histories are helpful to learn what steps we must take to reduce our risk of certain genetic diseases that have been passed down within our family. Whether or not our family health history sheds information on recessive disorders that we and our family members may be carriers for, it can still help us plan for our own health and the health of our future family.  Fortunately, there are additional steps we can take when planning for a family – such as carrier screening – to learn about our risks of passing on recessive genetic disorders.

You can learn more about family health history and find tools to capture yours here. If you have additional questions about genetic health conditions or family health history, please contact the Sarnoff Center at (312) 357-4718 or JewishGenetics@juf.org and ask to speak to our genetic counselor.

In honor of November as Family Health History month, the Sarnoff Center and partner organizations are sharing information about certain health conditions that may run in families, and how to talk to your relatives about those conditions. You can find previous posts in this series here. 

By Sarnoff Center staff

It seems as though we’ve all been touched by cancer in some way, whether it’s through the diagnosis of a friend, a family member, or even ourselves. But some families have multiple relatives affected by cancer, and often at young ages. In my own family, my aunt passed away from aggressive breast cancer in her 50s, and several of my dad’s cousins received breast or ovarian cancer diagnoses.

In some instances, a genetic mutation may explain why it seems as though cancer runs in the family. Jewish families in particular have increased risk of BRCA mutations, which are linked to breast cancer in men and women, ovarian cancer, prostate cancer, pancreatic cancer and melanoma. These mutations occur in about one in 40 individuals with Jewish heritage compared to about one in 500 in the general population.

BRCA mutations are inherited in an autosomal dominant fashion, which means that a parent with a BRCA mutation has a 50 percent chance of passing that mutation on to a child, and inheriting one changed copy is enough to increase risk. These mutations affect men and women, passing down from mothers and fathers to daughters and sons.

A Sarnoff Center associate board member shared her family’s story in an earlier blog post, recalling that she first heard about BRCA when she learned that the mutation affected her family. Her experience isn’t uncommon; after all, genetics is a family affair. If one person learns they have a BRCA mutation, it’s important to share that information with other relatives so each person can talk to his or her care team.

While a person with a mutation in a BRCA gene has a significantly increased risk of developing certain cancers, not everyone with a BRCA mutation will develop cancer. On the other hand, just because someone does not carry a BRCA mutation, it does not mean they are not at a risk for cancer. One good way to help providers assess your personalized risk is to collect and share your family health history.

A few questions to consider when talking to your family about any history of BRCA-related cancers include:

• Do we have Ashkenazi Jewish ancestry in our family?
• Has anyone in our family been diagnosed with breast cancer (male or female)? If yes…
  • At what age did they receive a diagnosis?
  • Did they have triple negative breast cancer?
  • Did they have breast cancer and another type of cancer?
• Has anyone in our family been diagnosed with ovarian cancer?
• Has anyone in our family been diagnosed with pancreatic cancer?
• Has anyone in our family been told they have a genetic mutation that increases their risk of cancer?

A genetic counselor can help you think through other questions to ask and how to start the conversation.

You can learn more about family health history and find tools to capture yours here. If you have additional questions about hereditary cancers or want more tips for how to start a conversation with your relatives, please contact the Sarnoff Center at (312) 357-4718 or JewishGenetics@juf.org and ask to speak to our genetic counselor.