NATIONAL HARBOR, Maryland — Genetic counseling is today one of the most rapidly expanding professions in health care, according to an industry expert focusing on rare diseases.

Gillian W. Hooker
Gillian W. Hooker, PhD, vice president of clinical development at Concert Genetics. Credit: Larry Luxner

“We see astronomical growth in the things we can test for, and in the number of labs,” said Gillian W. Hooker, PhD, vice president of clinical development at Concert Genetics. 

There are now 5629 genetic counselors across the United States, with more than 500 new counselors graduating every year, according to Dr. Hooker, who’s also past president of the National Society of Genetic Counselors.

“You often hear people say there’s a shortage of genetic counselors. There really was a time when you could say that,” said Dr. Hooker, speaking August 27, 2021, at the World Orphan Drug Congress USA 2021.

“But given the recent growth, I would argue that what we have is a distribution problem,” she said. “Genetic counselors are not getting out to the people who need them. They’re often siloed in academic centers that are hard to get to, and even fewer are available to see patients.”

In fact, the vast majority of Americans live hours away from the nearest genetic counselors, with heavy concentrations on the East and West coasts, and in large cities. In response, she said, “there’s been a growing telemedicine sector providing genetic counseling. These models will continue to evolve and emerge in ways that are positive to patients.”

However, billing and reimbursement remain major barriers for hospitals seeking to expand access to genetic counseling services. With that in mind, Dr. Hooker said, passage of the proposed Access to Genetic Counselor Services Act of 2021 is “critical to the future” of genetic counseling.

“We’ve had incredible support from the rare disease community. This bill would recognize genetic counselors as billing providers under Medicare, deferring to state licensure laws for scope of practice,” Dr. Hooker said, adding the bill has 20 cosponsors in Congress as well as strong bipartisan support, and 300 supporting organizations including patient advocacy groups, physicians’ associations, and hospitals.

Dr. Hooker outlined issues with genetic testing in a white paper titled “Understanding Genomic Testing Utilization and Coverage in the US.” In it, she argued that the genetic testing value chain is fragmented at every stage.

“We really need to build a mature infrastructure for genetic care, a well-distributed, trained workforce, and straightforward coverage of medically necessary, valid, useful tests,” she said, “and we desperately need tools to place knowledge in the clinical workflow to enable patient identification, ordering, and informed, integrated results.” 


Moving genetics into the clinic: policy, access, and reimbursement. Presented at: World Orphan Drug Congress USA 2021: August 26, 2021; National Harbor, Maryland.