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.

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.

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!

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

June is a time to honor our fathers, grandfathers, and all the men in our lives. One way to show your appreciation? Make sure they know the facts about BRCA mutations, which are linked to certain cancers and occur with increased frequency in the Jewish community. 

We all carry changes – or mutations – in our genes. While many of these mutations are harmless, others increase a person’s risk of cancer or other disease.  Mutations in the BRCA1 and BRCA2 genes are linked to an increased risk of breast cancer, male breast cancer, ovarian cancer, prostate cancer, pancreatic cancer and melanoma. While not everyone with a BRCA mutation will develop cancer, their lifetime risk for cancer is significantly higher than someone without a gene mutation. About 1 in 40 Ashkenazi Jews carries a BRCA mutation, a rate more than 10 times higher than the general population.

Because breast and ovarian cancers occur more frequently than other cancers associated with BRCA, public health efforts have historically focused on educating women about these gene mutations. Now it’s time to address men and BRCA mutations.

Fact: Men can carry BRCA mutations

Everyone has BRCA1 and BRCA2 genes and can carry changes in these genes. These mutations can be passed down from both mothers and fathers (to sons or daughters) at equal rates. If you or your partner carries a BRCA mutation, there is a 50% chance with each pregnancy that your child will inherit the mutation and associated risks.

Fact: Men with BRCA mutations have increased risks of developing certain cancers

Now you know that some men carry BRCA mutations and are at risk of passing them on to their children. But did you know carrying BRCA mutations comes with implications for your own health? Men with BRCA mutations have a 1-10% lifetime risk of developing male breast cancer and a 15-25% lifetime risk for prostate cancer, both of which are much higher than the risks in the general population.¹ People with BRCA mutations may also face increased risk for pancreatic cancer and melanoma, an aggressive skin cancer.

Fact: Men (and women) with BRCA mutations can take risk-reducing measures

If you have a BRCA mutation or think your family might be at risk, meeting with a genetic counselor is a good first step. A genetic counselor will review your family history of cancer and help you decide whether or not genetic testing is right for you. They will also discuss professional recommendations for managing and reducing BRCA associated cancer risks, such as increased screening and surveillance.  

For more information about BRCA mutations or genetic counseling, contact the Norton & Elaine Sarnoff Center for Jewish Genetics at jewishgeneticsctr@juf.org or 312-357-4718.

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