CHICAGO – While many genetic counselors believe their job title creates barriers, most aren't convinced that the field needs a name change, according to data from a poll shared at the National Society of Genetic Counselors' annual conference last week.
About 45 percent of roughly 280 genetic counselors surveyed in an online poll taken before the conference said the title "genetic counselor" creates challenges for the profession. In comparison, 17 percent felt the job title did not create barriers and 38 percent said they weren't sure.
However, when asked if the "genetic counselor" title should be changed, a plurality — 45 percent — were undecided. Only 24 percent of genetic counselors voted that the title should be changed, and the remaining 30 percent said it should not be.
"There are those who feel that this name has become a burden," said Deanna Darnes, a genetic counselor and clinical trial specialist at the Scripps Research Translational Institute, during a session on the topic Friday. It presents "a mountain to overcome each time we have to demonstrate our worth, express our usefulness, or explain how we fit on a healthcare team."
The poll data were shared during a session titled "Say My Name, Say My Name: It's Time to Discuss the Problem with the Name 'Genetic Counselor,'" which was structured as a debate in which four genetic counselors were assigned to argue for or against renaming the profession. The opinions shared during the debate did not necessarily reflect the personal views of the panelists, but the issues they raised shed light on why genetic counselors, since the profession's founding, have expressed concerns about their job title.
Since the term was first coined in the 1940s, "every decade this concern appears in journal articles, in blogs, in conferences, and of course, amongst ourselves," Darnes said.
Those arguing for a name change emphasized that the term is not intuitive and can be difficult to explain, which could influence both patients' willingness to see a genetic counselor and clinicians' decisions on whether to place referrals. They added that the term "counselor" has associations with other fields patients might not have positive feelings about, such as financial counseling, marriage counseling, or psychotherapy.
"If after 50 years of the first graduating class [of genetic counselors], we are still explaining who we are and what we do, maybe the problem is our name," said Carla McGruder, a senior genetic counselor at Color Health. "The name genetic counselor is at a 12th grade reading level, when the US average reading level is 7th or 8th grade."
"It will take some time to adjust to a new name," McGruder acknowledged, but at least then the field can pick a name "that doesn't require a mini-thesis every time we say it."
Brad Rolf, a genetic counselor and associate program director of the genetic counseling graduate program at the University of Washington in Seattle, cited a 2013 study in the Journal of Genetic Counseling that found most patients had not heard of genetic counseling and that many misunderstood the title, assuming genetic counselors are responsible for preventing genetic diseases or helping couples have children with "desirable characteristics."
However, those arguing against the name change said that while many have anecdotes about people's hesitancy to engage with genetic counseling or lack of awareness about what the field does, there's not sufficient evidence regarding to what extent that's caused by the moniker itself and whether changing it from "genetic counselor" to something else would solve those problems.
"If we changed our title, we would still need to raise awareness about what we do as a profession," said Chandler Means, a genetic counselor at Genome Medical and first author of a 2019 study in the Journal of Genetic Counseling in which investigators interviewed genetic counselors about the appropriateness of the title.
In the study, authors concluded that the risks of changing the title outweighed the potential benefits. "Although many of them did agree [the counselor part of the title] does come with perceived misunderstanding or stigma associated with it, they also argued that it's the part of our profession that sets us apart from other healthcare professionals," Means said during the panel.
Instead of a name change, Means suggested efforts to address limited understanding of what genetic counselors do and the lack of reimbursement from insurers would do more to improve access to the profession's services. Also, "in order for it to be worth the risks, a much better title would need to be agreed upon and it would need to solve a lot of the issues that we've talked about today, and I'm not sure one of those exists," she added.
In the poll, respondents proposed alternative titles like genetic consultant, genetic specialist, or genetic practitioner, among other suggestions.
Antonina Wojcik, a laboratory genetic counselor at Mayo Clinic, suggested that changing the name could disrupt NSGC's ongoing advocacy efforts around Medicare coverage, as well as progress to date on state licensure. There are 35 states in the US that have advanced licensure laws defining genetic counselors' scope of practice, and each would need amending if the title changed.
"From a legislative perspective, the logistics of changing the title at this stage of our progress would create more barriers rather than remove them," Wojcik said. "We need compelling evidence of how a new title would benefit our profession before we undo decades of legislative progress."
Genetic counselors debating both sides of the issue agreed more research was needed on the impact of a name change. In the meantime, "not only should we retain the title of genetic counselor, but we should be proud of it," Means said.