Despite the dizzying growth of testing services, experts still aren’t sure about the right number of genetic counselors needed to serve the population—especially in light of U.S. Bureau of Labor projections that demand for these positions will grow nearly 30 percent between 2016 and 2026. “It’s a very underserved profession. There are so many jobs available and not enough qualified, trained counselors,” says Stephanie Gandomi, the assistant program director for the genetic counseling program at Boise State University, which is launching an online program to help meet that demand. Enrollment in the nation’s 39 genetic-counseling graduate programs has risen from 364 students in 2017 to 402 in 2018, and at least 20 new programs are slated to begin enrolling students in the next few years, according to industry data. The industry’s goal: to have one counselor per 100,000 people in the United States by 2020.
Genomics companies are also trying to find creative ways to promote genetic counseling as the hot career of the future. Last year, Illumina, the market leader in DNA sequencers, and the nonprofit One San Diego hosted an educational event for about 200 San Diego–area high-school students and commissioned the “Genomics Rap” from the educational music company Music Notes with this lyric: “I’m cracking the code ... Genetic counselor, yeah! My job is working with patients. Help them understand the meaning of their genomic information.”
As more DTC companies tell people about serious health threats lurking in their DNA, including those they are powerless to influence, it remains to be seen how many of these customers will see the need to supplement what they can find on Google with a professional’s perspective.
“Not every single patient needs traditional genetic counseling,” says Ormond, who’s part of a working group that’s developing a model about when to prioritize traditional genetic counseling. For example, if your results revealed you were at risk for a genetic heart condition that needed rapid medical attention or an unexpected condition that’s harder to deal with emotionally, traditional genetic counseling would be appropriate. But for a straightforward test where the results might not impact your health immediately, it might be enough to have a shorter appointment with a counselor, to chat with a primary-care doctor, or even just to watch some educational videos.
Perhaps the genetic counselor of the future will assume an increased role in providing psychological support and comfort. “Some people just want to talk to an unbiased third party who will listen to their story and provide empathy, so they don’t have to keep all their feelings and fears inside,” Weissman says.
Wurtzel, who received her 23andMe results in March that revealed her risk for Alzheimer’s disease, wishes she’d anticipated her need for a sympathetic ear. “I wished someone was there to listen to what I was feeling at the time,” she says. “I don’t advise anyone to do it by themselves.”