CJG Blog

Center for Jewish Genetics blog

Farewell to Karen Litwack

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Sarnoff Center Staff

By Jason Rothstein, MPH

We at the Sarnoff Center are sad this week to be saying farewell to our Senior Advisor, Karen Litwack. Although Karen officially “retired” at the end of 2016, she was generous enough to continue to lend her expertise to our work on a part-time basis for the first half of 2017.

Karen began as the Center’s first Director in 2000. When the organization began its work, the Chicago Center for Jewish Genetic Disorders (as it was then known) was a small program focused on educating Jewish and interfaith couples about Tay-Sachs and a handful of other disorders. Under her leadership, the Center evolved from these humble beginnings to become an internationally known organization covering multiple aspects of Jewish genetic health, and facilitating access for the Chicago community to one of the most advanced carrier screening programs in the United States.

After stepping down from the Director’s role at the end of 2014, Karen remained to take on new challenges as the Senior Advisor for Educational and National Initiatives. In this role, Karen focused on building the Center’s capacity as a provider of professional education for healthcare providers, and on expanding the Center’s presence as a stakeholder in local and national policy discussions about genetic health.

While Karen’s impact on the Sarnoff Center has been both deep and wide, it is her personal impact that stands out for so many of us. Over her long career with the Center, Karen mentored countless staff and interns, who carry the lessons of her leadership and her compassion with them on their careers in Jewish, medical, and other settings. As her successor as Director, I have benefited incalculably from her wisdom, guidance, and leadership, and I am grateful that we had such a long period to work together on these transitions.

This week marks a farewell to Karen, but we hope not a goodbye. With Karen’s passion for the Sarnoff Center’s work and love for our community, we have a feeling we’ll be seeing her in the near future.

 

Does Genetic Testing Create a 'Perfect Storm'?

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Long-term care insurance provides cost assistance for those who need caregiver support or help with daily living activities. Individuals who are already sick often face challenges when purchasing long-term care insurance, such as paying significantly higher premiums, or may be denied coverage altogether. In April, the FDA approved direct-to-consumer testing to assess genetic risk for 10 conditions, including Alzheimer’s disease. The increased availability and affordability of genetic testing can help healthy individuals to assess their risk of developing certain diseases, but may also make it more difficult for them to access services like long-term care insurance.

The Wharton School’s Jean Lemair and Arupa Gangulay of the Hospital of University of Pennsylvania recently sat down to analyze the emotional and economic impact of genetic testing for disease risk, with a focus on long-term care insurance. Throughout their conversation they explore several big questions: What does the information these tests provide really mean? Will people only buy long-term care insurance if they think they have higher risk of certain diseases? Can insurers ask people if they took the test? 

Lemair and Gangulay explain that if the only people who purchase long-term care insurance are those with increased risk of disease, the market won’t be sustainable. Without low-risk people in the pool, prices will rise and many people who need long-term insurance will no longer be able to afford it. In their words, genetic testing creates a dichotomy: “We want insurance, but we cannot get insurance if we reveal why we want insurance.”

Furthermore, genetic testing for Alzheimer’s disease risk is not highly predictive and results can be misleading, caution Lemair and Gangulay. If a person discloses his increased risk of Alzheimer’s disease, he may be denied long-term care insurance, even though he may never need assistance. On the other hand, an individual who tests negative for a mutation may opt not to purchase long-term care insurance. But just because she does not have increased risk for Alzheimer’s disease, does not mean she won’t require caregiver support due to another condition.

Ultimately, Lemair and Gangulay warn that a low-cost test that predicts predisposition to expensive diseases creates a "perfect storm" for companies selling long-term care insurance and, in turn, the consumers who need it.

You can listen to the podcast or read the transcript here.

Like the experts interviewed in this podcast, the Norton & Elaine Sarnoff Center for Jewish Genetics and the National Society of Genetic Counselors caution that the health risk tests sold by 23andme provide incomplete – and potentially misleading – information and do not require genetic counseling, a vital part of the testing process.

 

Meet Lewis Summer Intern Amy Weinstein

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Amy Weinstein

From Amy:

I’m excited to have the opportunity to intern at the Norton & Elaine Sarnoff Center for Jewish Genetics as part of the Lewis Summer Intern Program! I’m an undergraduate student at the University of Missouri and will be starting my junior year this upcoming fall. As a member of The Sigma Kappa Sorority, I’m involved with our various philanthropic organizations, including our sorority’s main philanthropy: The Alzheimer’s Association. I also am a cycling instructor on campus. I’ve always been passionate about health and fitness. Growing up in Northbrook and Chicago, I played on several sports teams and love the sense of community that sports provide. I joined the Lewis Summer Intern Program because I want to build a stronger relationship to the Jewish community, and am thrilled to start my journey with the Center!

Don't Forget Carrier Screening This Men's Health Month

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Man With Baby

Guys, be proactive about your genetic health! Research shows that women make about 80% of the health care decisions for their families1, including the men in their lives. If you and your partner are thinking about starting a family, now is the time for both of you to learn your family health history and carrier status (if you haven’t already).

Carrier screening can help you identify your risk of passing down an inherited disorder to a future child. The Sarnoff Center for Jewish Genetics offers an affordable and accessible screening program. Designed for Jewish and interfaith couples, the program tests for a comprehensive panel of recessive disorders that are found in the Jewish and general populations. A genetic counselor is available to answer questions before the test and explains results afterwards. 

You can complete the program from the comfort of home in 5 easy steps:
1. Register and pay a small program fee
2. Complete our online education course
3. Register for the screening test and receive a saliva collection kit
4. Mail your saliva sample to the medical provider
5. Receive your results from a genetic counselor in 2-3 weeks 

The Center is there for you throughout the process, providing access to expertise and payment assistance for those who need it. 

Make an investment in your future family by getting screened today! It will pay big dividends for you, your partner, your family and your community now and in future generations.

[1] https://www.ncbi.nlm.nih.gov/pubmed/25418222

Baby1

We are proud to announce that our Carrier Screening Program is open with our new medical provider Insight Medical Genetics (IMG). Visit our Get Screened page to learn more about our program and how to register!

CJG-Whats-In-Your-Genes

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 !