One morning in the fall, a genetic counselor from my practice saw a heavyset, 60-year-old patient who eased herself into a chair using a cane. The woman, who survived breast cancer at 37, had recently been diagnosed with cancer in her other breast. She felt worn out, she said, and overloaded with information. She worried not only about her own health, but also the future health of her three children, and wondered what genetic testing could tell her.
The counselor asked about her family and ancestry, and explained that the woman qualified for testing because of her previous cancer diagnosis. A test would identify genetic mutations the woman had inherited and could explain her diagnosis, the counselor said, detailing why testing was an option.
[See: 7 Innovations in Cancer Therapy.]
Appointments such as these demonstrate why genetic counselors are the unsung heroes of consumer genetics: They fill a niche that clinical geneticists (like myself), perinatologists or oncologists cannot, because of their focused skills. They are the liaisons between doctors and patients — interpreting and explaining test results, outlining care options and even conducting their own data analyses.
Certified counselors are well-trained and in short supply. But I recommend consulting one if your doctor refers you to a counselor or recommends seeing a counselor, particularly for concerns related to a family history of a genetic condition.
What Genetic Counselors Do
Counselors’ responsibilities include helping patients figure out if they should get testing and advising them about test results, consulting with clinical geneticists and other physicians, and running statistical modeling to analyze patient risks for diseases and abnormalities.
Patients most commonly see genetic counselors to get pregnancy care suggestions, based on whether health care providers diagnose fetal abnormalities or abnormal genetic screening results; or because they have a personal or family history of cancer. Counselors also advise patients about other personal and family history concerns, coordinate tests and work with insurance companies, and they work in settings that include universities, hospitals, laboratories, non-profits and government.
While there is a need for more counselors, the field of genetic counseling has grown significantly. As of 2014, only about 4,000 certified genetic counselors worked in the U.S., according to the National Society of Genetic Counselors; but that’s up 75 percent since 2006, and the Bureau of Labor Statistics predicts the field will grow 29 percent between 2014 and 2024. (By comparison, other occupations are forecast to grow by an average of 7 percent.) Counselors are well-educated and must earn a graduate degree from one of 15 academic programs nationally and be certified by the American Board of Genetic Counseling.
[See: How Social Workers Help Your Health.]
As efforts continue to deliver personalized medicine, counselors can be vital to your care. Yet not everyone with access to counselors leverages their expertise, unfortunately. Many gene tests should only be performed along with counseling to ensure you get the right tests — if any at all. Tests can be unique for each patient. Not everyone clinically benefits from testing, which can cost you a lot out of pocket (some tests cost more than $3,000) and mislead you with unfounded assumptions about health risks.
In an extreme example, the New England Center for Investigative Reporting found several women had inadvertently aborted healthy fetuses in 2014, after prenatal screening tests were misinterpreted without counselors’ assistance. (In response, the Society for Maternal-Fetal Medicine requested counselors help patients choose and interpret tests in the future.)
Interpreting Test Results
It’s up to counselors to interpret and explain very nuanced test results. People think cancer gene testing, for example, provides a simple “yes” or “no” answer to the question of whether they will get cancer. But it’s about assessing risk by looking at the specific pattern of cancer in the family and the gene mutation that causes the disease, which is often family-specific. Families, of course, can be complex — to say nothing of gene mutations.
When counselors work together well with doctors and patients, the scene looks like this: The genetic counselor met with the 60-year-old woman stricken by breast cancer, outlining the point of testing. Learning if the woman had a genetic mutation would influence what other physicians and I would recommend for her care. While a negative test would not reveal much, a positive indication of certain mutations would lead the counselor to suggest the woman consider options to reduce risk for future cancers. The positive test would also signal the counselor to offer the woman’s children and other close relatives testing to better prevent cancer from striking them.
[See: 10 Reasons to See a Physician Assistant.]
Revealing and coherently sharing such care options is what we strive for in clinical genetics. We could not succeed without genetic counselors.
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The Value of Genetic Counselors originally appeared on usnews.com
