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Guidance counselors for your genes?

At-home DNA tests, and disease-specific tests, make genetic counselors more important than ever

Genetic counselors can help anyone understand their genetic risks, or results of genetic tests.

Genetic counselors can help anyone understand their genetic risks, or results of genetic tests.

Once upon a time, getting your DNA tested was a rare thing – as rare as the genetic diseases that the tests tried to detect.

But no more.

These days:

  • You can order a kit through the mail that can tell you what diseases you’re at risk of developing down the road.
  • Your doctor can order dozens of tests to look for specific changes or variations in your DNA that might be causing your symptoms, or putting you at risk of future problems.
  • Or if you’re pregnant, you can have your doctor draw a vial of your blood, which you can send in to get information about the DNA of your future child.

And the ability to personalize treatment based on the exact gene variations you carry in your body is speeding up for many conditions.

How is an ordinary person supposed to make sense of all this genetic information?

And what do you do if you take a test and it shows you have a high risk or a current problem?

Beverly Yashar, Ph.D., directs the U-M Genetic Counseling training program and counsels patients at U-M Health System clinics

Beverly Yashar, M.S., Ph.D., directs the U-M Genetic Counseling training program and counsels patients at U-M Health System clinics

That’s where people like Beverly Yashar, M.S., Ph.D., come in. They’re called genetic counselors, and they act as “guidance counselors” for anyone who has had DNA tests done.

Decades of experience

U-M has had genetic counselors in its hospitals and clinics for decades. And when a master’s degree program to train students in this field began in 1979 at the U-M Medical School, it was one of the first in the nation.

It’s part of the U-M Department of Human Genetics, which was the first department of its kind when it was founded in 1956 – just three years after the structure of DNA was discovered.

But the advances of the last decade, and even the last year, have been “game changers” for genetic counseling, says Yashar. She directs the U-M genetic counselor training program and is the current director of the national group for leaders of such programs.

“We’re moving from helping patients with rare diagnoses, to those with common ones, and that’s where much of the growth will be in the future,” she says.

An explosion in testing

She points to companies like 23andMe, which recently got renewed FDA approval to market its genetic testing kits directly to the public as a way to assess a person’s risk of some diseases, their chances of passing on a harmful genetic mutation, and their ancestry.

A chart that genetic counselors use to show how genetic traits run in families - including some diseases with a genetic cause.

A chart that genetic counselors use to show how genetic traits run in families – including some diseases with a genetic cause.

Another company markets a kit directly to pregnant women, with the promise that if they send in a vial of blood drawn by their doctor, they can get results showing whether the fetus they carry is at risk of everything from Down Syndrome to cystic fibrosis. This noninvasive prenatal testing is based on capturing cells from the fetus that can be found in a pregnant woman’s bloodstream.

Meanwhile, other companies – and places like U-M’s own MLabs division – are offering doctors far more options for genetic tests that they can order for patients who they suspect of having or carrying genetic traits that could be harmful.

“The direct-to-consumer explosion means more testing will take place independent of someone trained in medical genetics and genetic counseling,” Yashar explains. “This is exciting because more people have access to this technology. But genetic counselors will be critical elements in helping people interpret and act on the results of the tests they order, as well as the many more tests that doctors now have access to.”

That means not only helping people understand just what it means to carry a certain DNA alteration, or to have a baby with a certain genetic risk. It also means helping families understand how the same genetic risk can affect siblings, parents, children, and descendants long into the future.

She notes that doctors who specialize in genetic conditions, and cancer doctors, have the most experience working with genetic counselors. They and their teams routinely turn to genetic counselors to help patients understand their options for testing, from prenatal genetic tests for pregnant women to screening for specific genetic risks for certain cancers and other conditions.

In other areas – from heart disease to nerve disease to mental health – the tests are newer, and doctors may be less familiar with the availability of genetic counseling.

Thankfully, the National Society of Genetic Counselors offer a free online service to help you find a genetic counselor near you — and more insurance companies are covering the services of a genetic counselor, as well as the cost of receiving doctor-ordered genetic tests.  However, insurance won’t cover the cost of tests that are marketed directly to the public, like 23andMe.

An expanding field

Dr. Yashar with students in the U-M master's degree program that trains new genetic counselors.

Dr. Yashar with students in the U-M master’s degree program that trains new genetic counselors.

With the explosion in genetics knowledge, the demand for genetic counselors is sure to rise. That makes it one of the jobs expected grow much faster in employment – as much as 29 percent in the next 8 years, according to the U.S. Bureau of Labor Statistics. In fact, it’s the 16th-fastest-growing occupation in the country.

All the specialties within genetic counseling are growing, says Yashar, which has proposed to expand the U-M program to train more students.  She recently co-authored a research paper that showed that most genetic counseling program directors across the country agree that training programs need to expand, or that the number of training programs needs to grow.

In collaboration with her graduate students and U of M colleagues, Yashar is also looking at how to get genetic counseling services to patients who haven’t historically had access to screening tests for genetic risk – such as women who get mammograms at safety-net clinics but might also have a genetic change that puts them at higher risk of early-onset forms of breast cancer.

Another issue on the horizon is the prospect that individuals will be able to have their entire genome – all their DNA – scanned and sequenced. Instead of looking for just a handful of known mutations, these tests can give healthy people an idea of their risk of various conditions.

“It’s a crazy, exciting time for both individuals and providers,” she says. “We genetic counselors will still be there for people with rare, complex conditions – but we also need to figure out how to partner with providers of all kinds to get patients the screening and testing that’s right for them, and to help them interpret and act on the results. The public wants this knowledge, and they can get it. We are here to help them.”

 

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