Demand for genetic testing, particularly for use in healthcare, has soared in recent years. This trend has highlighted that one group of people is essential to a successful genetic testing industry: genetic counselors.
Genetic testing is the linchpin of precision medicine, where the premise is to deliver more personalized diagnosis, prognosis, and treatment for each patient. Before a targeted cancer therapy can be chosen, before a healthy embryo can be selected for implantation, before a person’s risk of developing a particular disease can be evaluated — before all of that, genetic testing must be performed. Without such tests, it is impossible for doctors to know the best path for any given patient.
While doctors often order genetic tests, most of them freely admit that they are not qualified to understand the results. Even today, medical schools give students precious little training in genetics. That’s where genetic counselors come in. They have the special training needed to understand genetic data. They know the intricacies of genetic risk. And they are masters of the many other factors that are essential for making sure patients get accurate and complete information when they get tested, as well as help with the emotional reactions that can sometimes accompany getting what might be upsetting news. “They really are the bridge to the healthcare system,” says Gillian Hooker, president of the National Society of Genetic Counselors.
As genetic testing has ramped up in healthcare, experts have worried that a shortage of genetic counselors would limit doctors’ ability to prescribe these tests. In the U.S., there are approximately 5,000 genetic counselors. By contrast, there are more than 35,000 physicians specializing in obstetrics, just one branch of medicine that has embraced genetic testing. In theory, for every genetic test performed, a genetic counselor should be involved — often with patient meetings both before and after the test.
To address this potential imbalance between physicians looking to order genetic tests and the genetic counselors needed to make sense of them, the genetic counseling community has welcomed creative ideas for making their services available. From telemedicine to chatbots, it is testing out a number of alternative delivery methods for getting genetic counseling to patients who need it. Just in May the National Human Genome Research Institute, part of the NIH, approved major research funding for projects focused on genetic counseling — a major win for this field.
Fortunately, genetic counseling is one of the fastest-growing fields in healthcare, says NSGC’s Hooker. The field has really “stepped up” as it became clear some years ago that demand was outpacing supply, she adds. Hundreds of newly minted counselors are expected to be added to their ranks this year. Most genetic counselors must complete a master’s degree and achieve certification in order to see patients.
Today, Hooker believes that opening the doors to alternative methods for delivering counseling is already showing promise. The challenge facing her community, she says, was “how do we deliver genetic counseling more efficiently and in a way more people can access?” To that end, genetic counselors are offering sessions by phone or video. Chatbots are also emerging to provide educational information and answer basic questions. It’s an early example of how AI and automation can help, too. Some genetic counselors and services have even begun to specialize in helping people understand the tests they ordered directly from consumer-oriented services like 23andMe and Ancestry.com.
Remote counseling has become so popular that entire companies are now stepping in to fill this need, Hooker says. For example, genetic testing company Color won a $4.6 million grant from the National Institutes of Health to build a genetic counseling network for participants in the million-person nationwide All of Us precision medicine research program.
“Innovation and exploration are great and much-needed,” Hooker says, but she cautions that “there will always be a need for true human connection around some of these very personal challenges.” That means real counselors talking to patients, with empathy. Clearly, though, technology will have to play an increasingly large role in extending the reach of the limited number of genetic counselors. Otherwise, the growth of precision medicine will be in jeopardy.