CJG Blog

Center for Jewish Genetics blog

Understanding the Role of the Genetic Counselor

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This blog was originally published by the National Society of Genetic Counselors here: http://nsgc.org/p/bl/et/blogaid=227. We are happy to re-post this article.

Sharing family stories can do more than bring relatives closer together.  When the stories are about health, they can help family members make the right medical decisions. 

Genetic counselors play a key role in helping patients and their families get the care that’s right for them.  Genetic counselors work with doctors and other members of the health care team to help patients understand what their family history means to them, decide  what genetic tests to have, and know how to use the test results to make the best treatment choices.  This is especially helpful today as medicine becomes more personalized, and treatment plans increasingly are tailored to a patient’s individual needs.

Referral to a genetic counselor often raises many questions for patients and their family members.  As a genetic counselor specializing in cancer, I’d like to answer some of the common questions we receive. 

What is a genetic counselor?

Genetic counselors are an important part of the healthcare team. They work with patients and their families to help them understand genetic testing, guide them through the process and help them make informed choices based on their genetic testing results. Some also work in laboratories and help physicians select the most appropriate genetic test, determine the likelihood that the test will be useful, discuss the test’s limitations and help ensure the results are understood. Genetic counselors collaborate with a variety of specialties including pediatrics, neurology, cardiology, prenatal and cancer. 

Genetic counselors work with doctors and other members of the health care team to help patients understand what their family history means to them, decide  what genetic tests to have, and know how to use the test results to make the best treatment choices. 

Should I see a genetic counselor?

Meeting with a genetic counselor would be beneficial if one or more of the following is true about you or your family:

  • Early age onset of disease (ex. less than 50 years of age for breast and colon cancer)
  • Having a personal history of more than one cancer diagnosis
  • Three or more relatives on the same side of the family with the same type of cancer
  • Triple negative breast cancer
  • Ovarian cancer
  • Male breast cancer
  • Aggressive form of prostate cancer (Gleason grade 7 or higher)
  • A genetic mutation confirmed in a family member

How can I prepare for a genetic counseling visit?

During the appointment, the genetic counselor will draw your family tree. Before your appointment, talk with your relatives about health problems that run in the family. Ask about grandparents, aunt/uncles, and cousins on both sides of the family.

For cancer genetics, it is important to learn about the kind of cancer, the age of the relative at diagnosis, current ages or ages at death for each relative. It’s also useful to ask about colon polyps, the age at diagnosis, number of polyps and the type (pre-cancer vs. benign). Information about past surgeries, such as removal of the uterus or ovaries, is also useful for a risk assessment.

All of this information helps the genetic counselor estimate the lifetime chance of developing cancer, discuss testing options and explain how the test results might be used in your medical care and that of your relatives. This then helps the genetic counselor work with your physician to personalize your medical care.

Will my insurance cover genetic counseling?

The consultation is often covered by insurance. It is important to check with your insurance company to determine the details.

Will my insurance cover genetic testing?

The majority of insurance companies cover genetic tests if they are medically indicated and will provide useful information for your medical management. Each policy is different so it is important to check with your insurance company. Your genetic counselor can help with this process, and many of the testing labs facilitate the insurance prior authorization process.

If you have a concern about your personal medical history or your family history, meeting with a genetic counselor can be valuable.  Find a genetic counselor in your area by using NSGC’s “Find a Genetic Counselor” tool.

Joy Larsen Haidle, MS, CGC, is president-elect of the National Society of Genetic Counselors and a genetic counselor at the Humphrey Cancer Center in Minneapolis. 

And check out this video on genetic counseling, as tweeted by our friends at GeneDX: https://www.youtube.com/watch?v=hbZiL1LErZA

Carrier Screening is Important for All Couples

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By: Elayne Goldman and Leah Steinberg

The smell of pumpkin is in the air and that mid-November chill is beginning to settle in; stores are already preparing for the holiday season and Thanksgiving finally feels like it’s right around the corner. Although this time of year means different things to different people, it’s often a time to celebrate our cultural traditions with friends and family, whether that is American customs of pumpkin pie and turkey at the Thanksgiving table or religious customs with the myriad of holidays and celebrations before we move on to the New Year.

These traditions and cultural customs are important to us because they have been passed down through generations. In my family, Thanksgiving doesn’t begin until everyone present is wearing a plastic pilgrim hat, and it doesn’t end until everyone has had a piece of my grandmother’s celebrated pumpkin bread. Traditions like these can be difficult to explain to people who didn’t grow up with them (the hats seem to shock anyone new to the celebration, while we barely notice them anymore), but it is this sharing of family customs and traditions that make the holidays so special.

However, it’s important to remember that there is a lot more that can be passed down through generations than just funny looking hats and amazing recipes; the holidays are an excellent time to start the conversation with your loved ones about your family health history and what could be in your genes. Even if there is no family history of any genetic conditions in your family, it is still possible that you could be a carrier of one of these life-altering conditions. Carriers are generally healthy and usually show no symptoms of the disorder they are a carrier for; instead it is their future children who could be affected with these disorders, as carrier couples have a 25% chance with each pregnancy of having a child affected with that condition.

And just like explaining cultural traditions to one’s partner can be especially confusing in an interfaith relationship, the myths about carrier screening can be equally as confusing for these families. The reality is that interfaith couples are not exempt from the threat of being a carrier couple; like all other couples, the only way to know what is in your genes is to get screened.

Why, you might ask, would interfaith couples share this risk of being carrier couples for genetic conditions? Aren’t they called “Jewish genetic disorders” for a reason? In truth, these disorders do not exist solely in the Jewish community, they are just found more commonly in individuals of Ashkenazi Jewish descent. Additionally, all ethnicities carry increased risks for some genetic disorders, and just like in the Jewish community, none of these disorders are exclusive to one ethnic background. This means that interfaith couples can also be carrier couples, and if so, would then share the same 25% chance with each pregnancy that their child would be affected with one of these life-altering genetic conditions.

Knowledge is power, and if you have questions about what these results could mean for your family planning, please feel free to contact the Center. Finding out you’re a carrier couple does not mean the end of family planning, it means informed family planning. And as you get ready to share the pumpkin bread with those you love, start the conversation about family health history. 

And if you’re ready to get screened or want to learn more about the process, email us at GeneticScreening@juf.org. Carrier screening has never been more accessible, and the Center is here to hold your hand throughout the entire process. Contact the Center’s Community Outreach Coordinator at ElayneGoldman@juf.org for more information.


The Importance of Family Health History

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By: Karen Litwack and Elayne Goldman

November is Family Health History Month. When families gather at Thanksgiving, they may notice that they share common habits, lifestyles, and physical traits from holiday traditions to Jewish heritage to eye color. These commonalities are often passed down through the generations, both biologically through DNA, and socially through learned behaviors. Diseases that run in families are often connected to certain genes. Some diseases, such as Tay-Sachs, are based on single gene mutations, while others are based on a combination of genes, lifestyle, and environmental factors. Many genetic mutations occur more frequently in specific ethnic groups than in the general population. Therefore, knowing information about your ethnicity and your ancestors' countries of origin can help you determine if you or your family might be at risk. 

The National Office of Public Health Genomics found that 96 percent of Americans believe that family health history is important to health but only 30 percent have tried to organize their family health history information. The Surgeon General's annual Family Health History Month campaign is designed to encourage people to gather their family health history and discuss their findings with their healthcare provider so that this information can be added to their medical records and used to guide shared decisions about care. Today, an abundance of online tools have emerged to make tracking and sharing family health history information easier than ever.

Family health history information can provide benefits that go beyond individual health care, and knowing that history and identifying family members is just the first step along the continuum of care. This Thanksgiving start a new tradition. Pass on your family's health history to your children, grandchildren and those you care about most. Give thanks for the blessing of good health, and help yourself and others by sharing your information with your healthcare provider and researchers so that our community will benefit now and in future generations. 

Surgeon General: My Family Health Portrait: http://1.usa.gov/1xDsG4p

My Family Health Portrait is an online tool that makes it easy for you to record your family health history. The tool is easily accessible and simple to complete. It assembles your information and makes a "pedigree" (family tree) that you can download. It is private and does not keep your information. The tool gives you a health history that you can shore with family members and/or send to your healthcare provider.

Genetic Alliance Family Health History Tools: http://bit.ly/1LaRu8F


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.


Planning for a Family?

1 in 4 Jews carries a potentially devastating genetic disorder that could pass down to a child. Make carrier screening part of your family planning process. 


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 . Talk to 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 .