See also Demand for genetic counseling leads to lack of counselors
Theresa Hogan attended a genetic counseling session with her mother in 2011. Five years later, her mother’s breast cancer recurred and Hogan was encouraged by her mother and her doctor to see a genetic counselor.
In a simulated video created by the National Society of Genetic Counselors, Hogan sits across from Kayon Williams, Genetics Counselor at the New York Hospital Breast Center in Queens, New York. Williams asks Hogan for an update on her current health, medical history and family history, noting the BRCA (breast cancer) mutation found in Hogan’s mother and maternal aunt.
Williams will spend time in his session with Hogan explaining the possibility and process of genetic testing. His job is to make sure Hogan has all the information he needs to feel comfortable and confident.
Williams’ field of genetic counseling is expected to grow 29% between 2016 and 2026, according to the Office of Labor Statistics in 2019.
The National Society of Genetic Counselors defines genetic counseling as a means “to assess and understand a family’s risk of suffering from an inherited disease”.
Genetic counselors can help patients order genetic tests, interpret results, explain what is tested and determine which tests would be most beneficial for a patient, said McCall Larson, genetic counselor at Utah Valley Regional. Medical Center in Provo.
“We can be the first step or the middle step. We coordinate a person’s care and how they can get what they need, ”she said.
Larson said cancer is the biggest area of genetic counseling, helping more patients than other areas like prenatal care, pediatrics and cardiology.
“Cancer 20 years ago wasn’t a big area, now it’s huge,” she said.
Larson also said that people who are diagnosed with cancer or have a family history of cancer are encouraged to see a genetic counselor. She helps patients diagnosed with cancer determine which chemotherapy should be done and which surgeries will be best.
“There are certain chemotherapy or radiotherapy or surgeries that are more beneficial for certain genetic mutations. So they come for their own processing purposes, ”she said.
For those who don’t have cancer, Larson said genetic counseling can help determine what type of genetic testing should be done. She strives to help patients fully understand what the test will do and its limitations.
Communicating difficult genetic concepts is a challenge facing genetic counselors. Larson said genetics are hard to explain, and she’s trying to figure out which learning styles are best to help each patient improve their understanding.
Kyle W. Davis, a licensed and certified genetic counselor who works in neurology, said he strives to provide “an informed understanding of what (genetic testing) can do and its limitations.” At Lineagen, a diagnostic center in Salt Lake City that performs genetic testing for children with autism or with developmental delay, Davis also aims to communicate the current limitations of the field of genetics.
“There is so much data that we get and so much that we don’t know, that we are still trying to learn,” Davis said.
According to a study published in the medical journal Health Affairs, as of August 1, 2017, there were approximately 75,000 genetic tests on the market. These numbers include both tests from labs like the one Davis works in and popular direct-to-consumer tests like 23 and me and Ancestry.
“From what I’ve seen so far, a lot of people who have done the direct-to-consumer test always end up coming to me because the direct-to-consumer test doesn’t test everything you need,” Larson mentioned.
Davis said direct-to-consumer testing is not designed to provide a diagnosis.
“There are so many genetic tests and there is a lot of confusion about what they do or what they don’t do,” Davis said.
Larson said that because of this, anyone who takes a direct-to-consumer test should see a genetic counselor to answer questions and better understand the implications of the results.
Davis and Larson both said the increase in technology and knowledge has led to a greater need for genetic counseling and licensed and certified genetic counselors.
“We know a lot more about our DNA now and we are learning even more,” Larson said.