More People Are Seeking Genetic Testing, But Counselors Aren't Keeping Up : Shots - Health News After Angelina Jolie disclosed her genetic predisposition for breast cancer, demand for genetic tests went up. Counselors help interpret those tests, and demand for their services has increased, too.
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More People Seek Genetic Testing, But There Aren't Enough Counselors

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More People Seek Genetic Testing, But There Aren't Enough Counselors

More People Seek Genetic Testing, But There Aren't Enough Counselors

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RENEE MONTAGNE, HOST:

We're going to look first at genetic tests. More and more have come onto the market. Test results can help diagnose a disease, predict your risk of future problems and pinpoint the best medicines. But as Todd Bookman of WHYY in Philadelphia reports, there's a shortage of genetic counselors who can make sense of all these tests.

TODD BOOKMAN, BYLINE: Erika Stallings' mom was first diagnosed with breast cancer at the age of 28. So when it came back in her early 40s, her physicians started looking for clues.

ERIKA STALLINGS: And that's when her - the doctors sort of realized that there may be something genetic going on. And that's when she was tested and she found out that she was a carrier for BRCA2.

BOOKMAN: BRCA, or B-R-C-A one and two, are genes. When you have a mutated BRCA gene, it puts you at a higher risk for breast cancer. Because Erika's mom was positive, that meant there was a 50-50 chance that Erika would also carry the mutated gene. But she wasn't ready just yet to get the test.

STALLINGS: You know, I thought to myself, like, OK, like, I'm 22, like, you know, let me sort of figure that out.

BOOKMAN: She wanted to finish college and law school and get herself settled in New York City. When she is finally ready to get tested, turns out the hospital isn't ready for her. There was a five-month wait to get an appointment with a genetic counselor.

STALLINGS: It just sort of adds, like, a level of stress to something that's already stressful.

BOOKMAN: Stallings is one of many with that frustration. In fact, demand for genetic tests has been strong since 2013, and there are two main reasons for that.

JOY LARSEN HAIDLE: The first was the Supreme Court decision that the patenting of genes was no longer an option.

BOOKMAN: This is Joy Larsen Haidle with the National Society of Genetic Counselors. She says the court's ruling cleared the way for a wave of new tests. And that same year, there was this.

(SOUNDBITE OF NEW MONTAGE)

UNIDENTIFIED REPORTER #1: Angelina Jolie made a surprise announcement this morning. The Oscar winner is revealing...

UNIDENTIFIED REPORTER #2: A history of cancer in her family and an inherited gene mutation...

UNIDENTIFIED REPORTER #3: Angelina Jolie stunned the world with...

UNIDENTIFIED REPORTER #4: Announcing she had both breasts removed.

HAIDLE: Her sharing that information was really important because it allowed people to identify with her story. If it could happen to Angelina Jolie, it could happen to me.

BOOKMAN: Haidle says it started a culture shift. People became much more willing to talk about their genetic predispositions and seek out testing for different conditions, like Alzheimer's disease and cystic fibrosis. Neha Kumar is with the prenatal genetic testing company Recombine.

NEHA KUMAR: As genetic testing is growing and becoming more widely adopted by everyone for all sorts of different things - not just pregnancy but, you know, cancer, heart disease - there is a disconnect. Who will actually interpret and provide those results to patients?

BOOKMAN: Counselors work with patients to put their risks in context and coordinate follow-up care. They also help doctors order with the right tests based on any clues found in a family's medical history. There are just 4,000 genetic counselors in the country today. That's one for every 80,000 Americans. And while the appointment wait time for many non-cancer screenings is just a week or two, the industry is struggling to train more counselors. Only about 30 schools offer the required master's degree. Students like Nori Williams at Sarah Lawrence College start getting job offers well before graduation.

LORI WILLIAMS: As, like, the technology and understanding of genetics grows, the insight that genetic counselors can provide is also growing exponentially. So the job market looks great. And I'm very excited.

BOOKMAN: The starting salary for a counselor can reach $60,000. But many insurers, including Medicare, typically don't cover counseling sessions, meaning hospitals often eat the costs. One insurer is taking the opposite approach. After the Angelina Jolie spike, Cigna began mandating that anyone requesting the BRCA test had to first meet with a genetic counselor. The move was intended to limit unnecessary tests and save money. For Erika Stallings, the New York lawyer, she tested positive for the BRCA2 mutation. She says her genetic counselor helped her make sense of the results.

STALLINGS: I just always tell people, like, it's not just enough to know that you're positive. Like, you have to see someone who can, like, put those results in, like, context for you.

BOOKMAN: Stallings decided to have a preventive double mastectomy in 2014, at the age of 29. She's now volunteering with a breast cancer awareness group, helping share her genetic story with more women. For NPR News, I'm Todd Bookman in Philadelphia.

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