Genetic Counselors Help Patients Assess and Address Risk for Cancer, Poor Recovery From Concussion

Joy State of SocietyEvery day it seems new genes are discovered that increase the risk for cancer, disease or other health issues. Not surprisingly, people are overwhelmed and wonder, should I undergo genetic testing? Should my relatives get genetic testing? If I receive a positive test result, what happens next? Genetic counselors play a key role in helping patients make informed decisions, including whether to get genetic testing, and once test results are received, ensuring patients fully understand results. 

This week I’m joining more than 2,000 genetic counselors in Pittsburgh for the National Society of Genetic Counselors Annual Education Conference where we present and discuss the latest genetics-related research so that we can continue to improve the valued service we provide our patients.

This year’s research ranges from assessing college athletes’ interest in testing for a gene tied to concussion recovery to assessing the risk for leukemia and other blood cancers.

College Athletes Want Genetic Testing for Concussion-Associated Risks

Most college athletes would agree to be tested for apolipoprotein E (APOE), which increases their risk of a poor recovery from concussion or other brain injury, but say a positive result wouldn’t change their behavior or style of play and don’t appear to be concerned about potential discrimination. Those were the findings from a survey of 843 college athletes conducted by researchers at Sarah Lawrence College.

Thirty percent of people carry this gene, which may also increase the risk of late-onset Alzheimer’s disease. Survey findings include:

  • 76 percent of college athletes said they’d have the test if it were voluntary
  • 93 percent said they’d agree to testing if it were required by the school
  • 59 percent said the results wouldn’t impact their behavior
  • 67 percent said it wouldn’t affect their style of play

Overall, 45 percent played sports that put them at higher risk for suffering a concussion (basketball, football, soccer, gymnastics, etc.) and 55 percent participated in low-risk sports (swimming, baseball, tennis, volleyball, etc.). The athletes in high-risk sports were more likely to indicate they wanted testing, but not significantly more likely to change how they play. 


Genetic counselors can help student athletes understand the potential risks of undergoing genetic testing, including repercussions of a brain injury and the possibility that their parents, physicians, coaches or athletic directors may not want them to play if they have this gene.

It’s clear that student athletes would like access to the information and are not concerned about privacy or consequences of having genetic information that may result in discrimination. The athletes are generally not concerned about the link to Alzheimer’s disease, and the possibility of finding out more about their own risk for Alzheimer’s made them more likely to want to test.

Genetic counselors can help student athletes understand the potential risks of undergoing genetic testing, including repercussions of a brain injury and the possibility that their parents, physicians, coaches or athletic directors may not want them to play if they have this gene.

African-American Women with Ovarian Cancer Often Have Family History

Approximately 10-15 percent of women diagnosed with ovarian cancer have an inherited risk factor. However, inherited risk factors have not been well characterized in African American families as most research on inherited risk factors for ovarian cancer has focused on white women.  A new study out of Wayne State University in Detroit documents for the first time that African-American women with ovarian cancer are more likely to have a family history of cancers associated with inherited cancer syndromes. The pattern of cancers seen in relatives may have included breast, ovarian, colon and pancreatic cancers or melanoma.

The multicenter African American Cancer Epidemiology Study found that African-American women with ovarian cancer were 40 percent more likely to have a family history of cancers related to hereditary syndromes, including Hereditary Breast/Ovarian Cancer Syndrome, Lynch Syndrome or Cowden Syndrome than women who didn’t have cancer.

African-American women with ovarian cancer should discuss genetic testing with their doctors and should also ask to be referred to a genetic counselor.  A genetic counselor can discuss genetic testing options, the odds that an inherited risk factor is present in the family, how to use the information in medical care decisions and how to talk with relatives about being tested for an inherited risk.

Inherited Risk for Leukemia, Other Blood Cancers More Common Than Thought

Leukemia and other blood cancers may be inherited far more often than previously thought, suggests research from The University of Texas MD Anderson Cancer Center, Houston. These findings suggest people who have blood cancer, or have a family member who does, may want to consider genetic testing.

Blood and cancer doctors historically thought hereditary predispositions to blood cancers happened in less than 1 percent of cases, but in the last five years, more than 10 blood cancer-related genes have been identified. In the study, of the patients with blood cancer or a family member with blood cancer who underwent genetic testing, 16 percent had a genetic predisposition.

People with patterns of leukemia or another blood cancer in their family would benefit from seeing a genetic counselor who specializes in blood cancers. Genetic counselors can look at family history to help determine hereditary risk and provide information to help make an informed decision about genetic testing. Meeting with a genetic counselor is also important in this setting to ensure that the right kind of a sample is used for genetic testing to ensure that the results reflect an inherited component and not something specific to the cancer as it developed.  This is especially important for individuals who have had blood transfusions or are being treated for a blood cancer.

Connect with a genetic counselor in your area using NSGC’s Find a Genetic Counselor tool. 

Joy Larsen Haidle, MS, LGC, is president of the National Society of Genetic Counselors and a genetic counselor at Humphrey Cancer Center in Robbinsdale, Minn.

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