NEW YORK – Genetic counselor Katie Stoll got a letter from an insurance company last fall asking her employer, the nonprofit Genetic Support Foundation (GSF), to pay back the money it had already reimbursed for a 70-minute session with a patient.
The patient, a woman in her 50s, had been diagnosed with breast cancer and had relatives with breast, ovarian, and prostate cancer. Based on these factors, her primary care doctor referred her for counseling and testing to assess if she was at higher genetic risk for developing cancers. At the genetic counseling session, the patient anxiously asked lots of questions about genetic testing and other medical issues, which Stoll addressed for more than an hour. GSF sought reimbursement for this counseling, which the patient's insurer recommends before getting tested, submitting two units of the Current Procedural Terminology code 96040.
Trained nonphysician genetic counselors can use 96040 to bill for 16 to 30 minutes of face-to-face services (or for telegenetics services using 96040 code modifiers), such as assessing patients' and their families' history of diseases and providing psycho-social support. Although GSF's price on its website for a new, hour-long genetic counseling visit is $250, or $125 per 30-minute block of service billed using 96040, its negotiated rate with the insurer is far less.
Most genetics experts would argue that Stoll's patient, someone with a personal and family medical history suggesting a hereditary cancer syndrome, is exactly who should receive genetic counseling and meets the US Preventive Services Task Force guidelines for mandated coverage under the Affordable Care Act. In this case, the insurer initially paid GSF's claim but then said it was a mistake and asked for the money back. When Stoll refused, the insurer deducted the funds against future claims. Stoll kept pushing back, and the payor eventually relented and repaid the claim. Even when the need for genetic counseling is "very clear," insurers are "still denying these [96040] claims outright and often making us fight to get paid," said Stoll, GSF's executive director.
She declined to name the insurer or publicly disclose GSF's contracted rate out of concern that doing so would negatively impact future interactions but scoffed at the idea that GSF has any say in the amount it "negotiates" with payors for 96040. Considering GSF's total charges to all commercial and Medicaid insurance plans in 2023, Stoll estimated that the firm received 15 cents for every dollar it billed using 96040. From Stoll's perspective, "genetic counseling is an impossible service to deliver and get paid for right now."
In the National Society of Genetic Counselors' 2024 survey of the profession, 63 percent of genetic counselors said they bill for their services, and of those billing, 75 percent said they submit 96040 to commercial payors. Genetic counselors may be billing this code, but counselors interviewed for this article recounted a high rate of payor denials for a variety of reasons and inconsistent payment at a range of rates, typically not enough for many community hospitals and cancer centers to justify hiring full-time genetic counselors or keeping the lights on at telegenetics practices.
"A misconception in the genetic counseling community is that we have this code and that means reimbursement," said Stephanie Gandomi, who has worked at insurance companies and genetic testing labs and now directs the master’s degree genetic counseling program at the Southern California University of Health Sciences. "But that's not true."
NSGC has been working with the American College of Medical Genetics and Genomics (ACMG) and the American Medical Association (AMA) for two years on a new CPT code, which it expects will replace 96040 in 2025 and improve the reimbursement prospects for the field. Since the AMA first developed 96040 in 2005, and it went into use in 2007, "the genetic counseling profession has changed a lot," said NSGC President Colleen Campbell. "NSGC felt it was time to modernize the code."
Although NSGC is restricted in what it can say until the AMA publishes the new code number and final descriptor in September, the organization can now discuss certain details the US Centers for Medicare & Medicaid Services published in July in its 2025 physician fee schedule proposed rule. One aspect of the new code, provisionally named 9X100, that NSGC believes could be particularly impactful for the field is it doesn't stipulate "face-to-face" time as 96040 does and would allow billing for "30 minutes of total time provided by the genetic counselor on the date of the encounter."
"Genetic counselors do a lot of things outside face-to-face time with a patient," Campbell said, noting that the language in the proposed rule suggests genetic counselors could bill for the preparatory and post-counseling work they do on the same day they see a patient.
For example, in addition to the hour Stoll spent discussing genetic testing and the risk of hereditary cancers with her patient, she estimated spending around 10 minutes reviewing the patient's records before the appointment and around 60 minutes ordering genetic testing, initiating the prior authorization with the insurer for the test, arranging for sample collection, and entering the session details into the electronic medical record. Genetic counselors aren't billing and getting paid for that additional time using 96040 currently, according to those knowledgeable of reimbursement policy.
But genetic counselors who have struggled for years to get paid even for face-to-face counseling time with patients using 96040 doubt that a new code, even one that could allow them to bill for more of the work they do, will change much so long as there isn't better recognition of the profession's value across the US healthcare system. Perhaps the biggest hurdle for the profession is that CMS doesn't recognize genetic counselors as healthcare providers, so they can't bill 96040 or the new CPT code for services provided to Medicare patients. State Medicaid programs and commercial payors can stipulate different billing and coverage parameters, but they pay attention to CMS policy, and genetic counselors' inability to bill Medicare hasn't helped relations with these other payors.
Meanwhile, other healthcare professionals, such as medical geneticists, doctors, and nurses can bill Medicare for counseling services using Evaluation and Management (E&M) services CPT codes, which impacts how institutions schedule patients and staff clinics and influences their willingness to hire genetic counselors. After considering the effort necessary to figure out billing 96040 for some patients but not others and the low levels of reimbursement compared to the costs of dropping bills, some institutions don't bill insurers for services provided by genetic counselors at all.
"There are a lot of places that don't drop the bill [with insurers] because it is not cost-effective," said Heather Hampel, associate director of the division of clinical cancer genomics at City of Hope, an institution that has made big investments in precision medicine, including building a genetic counseling team, but is currently not billing 96040. Hampel believes a new code is "a step in the right direction" toward better payor recognition of genetic counselors' value, but she doubts City of Hope will change its billing practices in the current environment. "I'm sure everyone, the institution and genetic counselors, would prefer that we bill … to show there's value in our work," she said. "We all probably would [bill], if we had Medicare recognition plus this new change in the code."
While a new CPT code won't impact genetic counselors' provider status under Medicare — a change that requires passage of pending federal legislation — in a recent emailed letter to members, NSGC still presented it as a "positive development" for the field. The chance for genetic counselors to get paid for more of the work they do could motivate institutions currently not billing 96040 to "at least revisit the conversation and explore what billing the new code would look like," Campbell said, adding that once AMA officially releases the code, the NSGC will advocate for its adoption with members, institutions, and commercial payors.
"The less our time [spent on a case] that's reimbursed, the more cost the institution is eating," said Hampel, who served as NSGC's secretary/treasurer from 2021 to 2022. The inability to reliably bring in revenue makes it harder to convince healthcare institutions to hire full-time genetic counselors instead of nurses or other providers who may not have as much genetics training but who can bill. As a result, some genetic counselors have gone into private practice or opened telegenetics companies to provide services to institutions on a contractual basis, while others have taken jobs at genetic testing labs educating clients about tests or classifying variants.
During the boom years in the genomics industry over the past decade, lab industry jobs were a reliable option for genetic counselors and paid better than institutions did. But amid the spate of post-pandemic bankruptcies, layoffs, and restructuring across the biotech sector, industry isn't the haven it once was. Jessie Conta, a genetic counselor and consultant who helps institutions implement genetic testing programs that are aligned with payor policies and practice guidelines, is seeing experienced colleagues and new graduates struggle to find jobs and institutions and labs inundated with 100-plus applications to job postings. The job market for genetic counselors "is the most challenging I've seen since I graduated 20 years ago," said Conta.
Toward better recognition
NSGC says it has been trying on multiple fronts to establish the profession in the US healthcare system and improve genetic counselors' payment prospects. The organizations' stated priority for the past few years has been enactment of federal legislation that allows genetic counselors to bill Medicare. There's been dissatisfaction in the genetic counseling community over NSGC's ability to advance this bill through Congress, and in 2022, a group petitioned the organization to alter its lobbying strategy. In an email last month, NSGC told members it has issued a request for proposals for a "refreshed strategy" that will move the bill toward enactment.
The professional society has also been lobbying for state licensure, and around three dozen states now have laws on the qualifications genetic counselors must meet and the services they're permitted to perform. Commercial insurers may require genetic counselors to be licensed for in-network credentialing — another major hurdle to billing and reimbursement that in Gandomi's view isn't being addressed by the community in an organized fashion.
While leading precision medicine and genetic testing programs at insurance companies like Blue Shield of California and UnitedHealthcare, Gandomi realized the payor community lacks awareness about genetic counseling as a profession to the extent that the words "genetic counselor" aren't even built into their electronic and paper billing systems and manuals. "It's one thing to have a code. It's another thing to be a recognized provider type," said Gandomi. "You can't bill that code and get it reimbursed until that recognition is there."
Gandomi sees commercial payor recognition improving, but progress has been slow and genetic counselors still don't have the sway that nurses and physicians do. "Most doctors, nurses, even [marriage and family] therapists, can pretty much walk into most payor meetings, and say, 'Hey, I'm an MD, an RN, or an MFT, can you credential me?' And they usually don't get a lot of pushback," Gandomi said.
In recent years, commercial insurers seeing their costs increase in step with greater utilization of genetic testing have begun requiring or recommending genetic counseling to ensure patients are getting "medically necessary" tests. But Scott Weissman sees little alignment between commercial insurers' requirements for genetic counseling and their willingness to credential counselors. As a certified genetic counselor in private practice licensed in Illinois, Weissman said he hasn't been able to get credentialed with national payors like Cigna, Aetna, and UnitedHealthcare, or with the regional Blue Cross Blue Shield of Illinois, because he's unaffiliated with a clinic or institution.
GenomeWeb reached out to several commercial payors about their genetic counseling coverage policies and asked them to respond to the challenges genetic counselors say they're experiencing with credentialing and billing; most didn't respond by press time. A spokesperson for Aetna pointed to a bulletin that outlines its policies covering counseling in the context of pregnancy management and medically necessary genetic testing backed by ACMG guidelines and lists accepted CPT codes, including 96040. The spokesperson added that Aetna credentials genetic counselors as it does other providers and "has many in-network genetic counseling providers who offer in-person, telephonic, and video counseling services."
Similarly, Cigna states in a 2016 article that genetic counseling may be required as part of the prior authorization process for certain genetic tests, but it notes that customers must get counseling from its list of genetics professionals who are "independent" and don't have a conflict of interest with a testing lab.
With greater genetic testing utilization, fraudulent billing practices have also increased, and payors' emphasis on independent genetic counseling may reflect concerns that counselors employed or contracted with labs may recommend unnecessary testing. Surya Singh, CEO of InformedDNA, a precision health and telegenetics company that works with payors to ensure patients are receiving medically necessary testing and provides genetic counseling services to hospitals and clinics that can't afford to hire in-house counselors, believes these conflict-of-interest concerns are legitimate in a rapidly growing industry like genetic testing, where niche labs may be looking for any way to drive test uptake. But this perception isn't insurmountable, he said, as long as labs are transparent about utilization data and demonstrate through reporting that genetic counselors they're working with are recommending testing aligned with guidelines and payor policies.
Weissman said he does provide counseling to patients for a lab client to determine if they meet coverage requirements for genetic testing, but he is confident he can show he's recommending appropriate tests if payors raise this concern, which they haven't.
Meanwhile, some insurers are allowing nurses and doctors with varying levels of genetics experience to perform counseling, which genetic counselors pointed out can also lead to inappropriate testing and patient harm. There is an "antiquated view" in some payor circles, Singh said, that genetic counseling may be unnecessary if the patient is already seeing a doctor or a nurse and discussing their medical history and testing with them.
"Why don't we just roll in the pharmacist consultation and let the physician and nurse dispense the drug? Why do we refer diabetic patients to nutritionists and patients with osteoporosis to physical therapists?” he said. "Because specialization is important for achieving better outcomes." There is a body of published literature showing that involving genetic counselors in the pre-test process can lower spending on unnecessary tests and reduce errors that can harm patients.
Since InformedDNA has in-network status with major payors that together cover 150 million lives, payor credentialing isn't a problem for its genetic counselors, though Singh acknowledged that credentialing is generally "too onerous," especially for those in private practice.
After insurers denied Weissman credentialing, he hired a company to help make inroads with them and appeal their rejections. He wrote letters pointing out that payors' own policies often required genetic counseling for test prior authorization; that they were granting psychologists, social workers, nurses, and other Ph.D.s in-network status as genetics providers who were not; and that there were weeks- to months-long wait times to see genetics experts at local hospitals. It didn't move the needle, and without in-network status, Weissman said he receives "zero reimbursement" from payors when he bills 96040 for patients he sees outside of institutional contracts. In those cases, he tells patients they'll likely have to pay out of pocket for genetic counseling.
Even though many insurers have policies requiring genetic counseling before getting testing, "it really blows my mind that they are denying some patients access and coverage by not letting in some genetic counselors that provide the service," said Weissman. His colleagues at institutions that help them get credentialed with payors and have more pull negotiating reimbursement rates may have more to gain from a new code, he acknowledged. "From my perspective, a new CPT code means absolutely nothing."
Until the genetic counseling community goes payor by payor and flags some of these discrepancies between coverage policies and credentialing practices, reimbursement won't improve, according to Gandomi. An NSGC payor task force that Gandomi was part of recommended the need for just such a dedicated effort in 2019, but she's not sure if anything came of it. "I don't know of any national advocacy on this issue," she said.
"We're hoping that with a new code allowing genetic counselors to bill for the total time [spent on a case] on the day of encounter, more institutions will recognize this increased benefit and help with payor credentialing," she said, adding that after the AMA publishes the code in the fall, NSGC will start educating members on billing best practices and leverage the opportunity to have conversations with payors around credentialing, too.
'Squeeze worth the juice?'
But as most genetic counselors interviewed for this article repeatedly emphasized: Billing is one thing, getting paid is another. An analysis of one-hour reproductive genetic counseling encounters billed using 96040 over eight years at the Rutgers Robert Wood Johnson Medical School in New Jersey showed managed care Medicaid and commercial plans covered 61 percent of encounters and paid 36 percent of the amount billed on average.
Commercial payors may decline to pay for genetic counseling entirely, for example, when they don't deem it medically necessary or if they don't recognize the billed codes. A common reason commercial payors cite in denying 96040 claims, in GSF's experience, is that CMS has placed this code into its "status B" list for services it will pay for when billed as part of bundled services but won't pay when billed separately.
A few years ago, an insurer GSF is credentialed with started routinely denying 96040 claims citing this reason. (Stoll declined to name the insurer, again, to preserve future relations.) The Olympia, Washington-based nonprofit reported its concerns to the state department of health, which informed the insurer that it cannot issue blanket denials for 96040, even if it is a status B code, as it must cover genetic counseling when billed for prenatal diagnosis of congenital disorders under state law and for patients with a strong family history of breast or ovarian cancer under the Affordable Care Act.
When the DoH asked how GSF and others should submit claims for services, the payor replied that "genetic counseling is definitely a covered service," but since it doesn't recognize 96040 as a status B code, it would accept the healthcare common procedure code S0265 when genetic counseling is performed under physician supervision or CPT codes 99401-99404 for general face-to-face preventive medicine or risk reduction counseling. Neither are options for GSF and other counselors who work independently and via telehealth, according to Stoll.
In the 2025 Physician Fee Schedule proposed rule, CMS is asking for public feedback on whether the new code should also have status B. Since genetic counselors can't bill Medicare, the agency said it considered giving the new code "status X," indicating services that are statutorily excluded from payment under the physician fee schedule and don't have relative value units. RVUs are calculated based on the skills and expense required to provide a service, and payors use it in their pricing calculations along with other factors and come up with a range of rates.
In Stoll's analysis of state Medicaid plans that have assigned a monetary amount to 96040 in 2024 for prenatal diagnosis genetic counseling, the values range from about $25 to $56. Other commercial payor fee schedules shared with GenomeWeb show rates of around $50, though Weissman has heard of some genetic counselors getting paid as much as $100 per unit of 96040 billed in some cases.
CMS's proposed rule does include RVUs for the new code, but it's not clear whether that will lead to improved pricing. NSGC said it cannot comment on the RVUs for 9X100 and how that might translate into pricing until AMA publishes the new code and associated details. However, NSGC recently told members it will submit comments to CMS supporting status B classification for the new code, since that will allow CMS to publish RVUs, and "this transparency is vital to the strategy for engaging commercial payors."
This doesn't give Stoll much confidence. "The number one reason why we don't get paid by commercial insurance is that 96040 is 'status B' under Medicare," she said, adding that if 9X100 has the same classification, then "there's no reason to think we're going to have more success with it."
InformedDNA bills 96040 and S0265 when genetic counseling is performed under physician supervision, and even with in-network status with many major insurers, Singh said the firm's experience getting appropriately reimbursed has been "mixed." Genetic counselors' inability to bill for the total time spent on a case beyond the face-to-face appointment has led to "widespread underpayment," but the entire time-based fee-for-service model is a far bigger problem, in his view. He believes shifting away from the time-based fee-for-service payment model to value-based bundled payments for medically necessary genetic testing and counseling could improve reimbursement, but those in charge of contracting at insurance companies "will say it's too complicated to set up," he noted.
Ascension St. Vincent Hospital in Indiana is having some success getting paid with 96040, though not the full amount charged, said Stephanie Cohen, who is one of three genetic counselors at the cancer genetics risk assessment program serving the hospital's 13 extension sites and other practices throughout the state.
A small win came in 2017, when Indiana's Medicaid program agreed to cover genetic counseling services, Cohen said, but it "hasn't been easy and took a long time" to get any traction with commercial payors. It took years to convince St. Vincent's compliance and billing departments to recognize genetic counselors so they could bill for professional services, even though they've had state licensure in Indiana since 2010. After achieving institutional recognition, Cohen and her colleagues had to convince hospital administrators to help them get credentialed with commercial payors so they could start billing 96040. Now, the hospital's genetic counselors are successfully billing the code for some outpatient cases, while in others, genetic counseling services may be included in bundled payments.
In cancer genetics, St. Vincent treats a lot of patients with commercial insurance, Medicare, and Medicaid, so figuring out how to successfully bill 96040, and eventually a new code, is complicated, but Cohen believes the effort is important for the future of the profession. Cohen's team collects detailed metrics on all patient encounters, such as the testing and screening genetic counselors recommend and patients receive, and the downstream revenue this generates. St. Vincent has dedicated staff to handle commercial insurers' prior authorization requirements and Cohen's group is using the metrics collected, including surveys showing high patient satisfaction with genetic counseling, to urge administrators to hire a genetic counseling assistant, too.
Genetic counselors and institutions not even trying to bill 96040 are missing the opportunity to demonstrate their value to payors, in Cohen's view. "We may only get paid for about half of the bills we drop, but that's money we would have left on the table," she said. "At a time when we're trying to justify our existence, demonstrating downstream revenue is great, but it's also helpful to have that income from the actual sessions and make sure you have all your systems in place, so when Medicare finally does recognize us, we are ready to go."
Uncertain future
The longstanding difficult reimbursement environment has historically limited healthcare institutions' ability to hire genetic counselors, pushing them toward industry jobs. But in the post-pandemic upheaval in the life sciences space, "industry jobs are no longer a guarantee for genetic counselors," said Meagan Farmer, who directed the University of Alabama at Birmingham's cancer genetic counseling program for a decade before working for digital health company My Gene Counsel and then joining Ambry Genetics in 2022.
Over the past two years, as genetic testing companies have gone bankrupt, laid off staff, restructured R&D priorities, and readjusted growth expectations, the upheaval has impacted job prospects for genetic counselors, as well. Last November, genetic counselor Katie Lemas was laid off from Genome Medical, a telegenetics company that partners with labs and healthcare institutions to provide third-party independent genetic counseling services. She estimated she applied for more than a hundred positions, but nothing panned out until May — a position returning genetic testing results for a study at Intermountain Health for a couple of hours a week at $52 per hour.
Eventually, a doctor she'd previously worked with also hired her to provide genetic counseling 16 hours a week at Intermountain-affiliated St. Mary's Regional Hospital in Grand Junction, Colorado, which pays under $48 per hour. The compensation from these two jobs is significantly less than her $125,000 salary at Genome Medical, Lemas noted, particularly the hospital job, "because they're not making any money off of my services because reimbursement is pretty low."
Limited job availability compounded with competition from out-of-work experienced counselors has made it a tough market for newbies entering the workforce. When GSF advertised for a new genetic counselor position last Christmas Eve, it received more than 80 applications within a few days, two-thirds of which were from experienced counselors, an uncharacteristically high number, which Stoll suspected likely reflected the lack of stable employment. When Farmer spoke with soon-to-graduate genetic counseling students earlier this year and asked a typical icebreaker question about post-graduation plans, several students expressed anxiety about not having jobs. Farmer couldn't recall a time when she'd encountered that.
From 2018 to 2022, the job acceptance rate for graduates of genetic counseling master’s degree programs was between 71 percent and 90 percent. But only 30 percent of soon-to-graduate students had jobs as of May, according to NSGC's survey of program directors, compared to 79 percent around the same time last year.
In a recent post on NSGC's blog, Campbell and Angela Trepanier, director of the genetic counseling graduate program at Wayne State University, recounted these statistics and reports that institutions are replacing genetic counselors with providers who have limited genetics training but who can bill for services. Academic institutions, particularly places that see a lot of Medicare patients, are struggling to fund new genetic counseling positions, and some institutions aren't accepting external referrals due to limited genetic counseling staff.
The struggle for payor recognition, the constant payment denials, and the lack of jobs has some genetic counselors questioning the future of the profession. "All these issues are related … and intersect with our workforce," Campbell acknowledged. "NSGC is working on multiple fronts to improve the reimbursement situation for genetic counselors and help our colleagues navigate the current uncertain climate."
By September, NSGC hopes to engage a new lobbying firm that can revamp its strategy on the Medicare recognition bill. At its annual meeting the same month, the society will share more details on the new CPT code and later this year, launch new educational efforts on billing and coding. Campbell has heard that institutions that had prioritized hiring doctors and nurses after staff losses during the pandemic are starting to focus on bringing in other types of providers and more genetic counseling jobs may open up later this year.
There is also optimism in the community that genetic counselors will survive the present turmoil, but they'll have to evolve. Genetic counselors are already harnessing technologies like AI and chatbots to maximize their efficiency and support more patients. And as whole-genome and exome sequencing to assess risk of diseases is integrated earlier in the care paradigm, many predict an even greater need for genetic counselors to support providers they typically don't work with, like primary care physicians, pediatricians, and integrative health experts, to order evidence-based tests and manage more complex cases.
Insurers' policies will also shift in response, Gandomi expects. The genetic counseling program she directs at the Southern California University of Health Sciences has already implemented curriculum and field-work opportunities to train students for such a future. "Just because a doctor can do a skin biopsy doesn't suddenly mean there's no need for dermatologists anymore, right?" she said. "The need for genetic counseling is going to grow and grow, but it's going to look different."