The Role of Genetic Counselors in Healthcare

Tricia See

Given the significant growth in genomics as a critical component of today’s medical/pharmacy care, genomics and genetic counselors are becoming increasingly important to healthcare executives.

“Genetic testing and genetic risk information play an important role in today’s healthcare environment when used appropriately and interpreted correctly,” says Tricia See, ScM, CGC, InformedDNA, the nation’s largest independent provider of genetics services, headquartered in St. Petersburg, Florida.

“However, due to continued and explosive growth in genetic testing, many providers and payers lack the expertise to understand the most appropriate use of these tests. Genetic counselors provide that expertise, which enables appropriate test choices by ordering providers, and informed decision making for patients. Genetic counselors can provide expert genetics guidance surrounding the appropriate use of genetic testing-getting the right test to the right patient at the right time. Inappropriate use of genetic testing can not only escalate healthcare costs but also lead to patient and provider misinformation and confusion.”  

Genetic liaisons

Genetic counselors play a critical role in today’s healthcare arena by serving as genetic liaisons for patients and providers. According to See, they translate complex genetic concepts and information into meaningful language, which can then be incorporated into personalized care.

“This is important not just for persons with rare single gene disorders but all persons who seek to learn more about their genetic information and risk for disease,” she says. “I see genetic counselors as an important part of the care team for patients throughout the healthcare journey-from prenatal care to adulthood. Given the availability of remote and telephone-based genetic counseling options, access to genetic counselors is available for all patients and providers, not just those in specialty academic medicine centers or major metropolitan areas.” 

In addition, according to See, the availability of direct-to-consumer genetic testing is rapidly increasing.

Patients are interested in their genetic data and have the ability, often at low cost, to pursue this interest.

“This often occurs without the consent or knowledge of their healthcare provider,” See says. “Patients are then bringing these results back to their care providers and looking for guidance as to what it means for their health-present and future. However, when we are talking about genetics, time is always an issue. Providers generally don’t have the time or expertise to address complex genetic information in the clinic. This is another place where the genetic counselor fits in. Genetic counselors can take the time to review genetic information with the patient, explore the psychosocial implications of this information, and relay relevant screening or treatment recommendations back to the healthcare provider.”

The balance of having the knowledge of the entire genetic testing landscape and how each test impacts medical care makes genetic counselors uniquely equipped to work with payers in determining coverage for genetic testing and gene-based therapies, according to See.

“We can advise payers as to what tests provide the largest impact to patient care-ranging from the size of the genetic test panel to the targeted patient population,” she says. “And sometimes it’s not as simple as whether or not genetic testing is appropriate. The deeper question may be what type of genetic test is best suited for each patient and at what point in their healthcare journey is it likely to have the greatest impact. Genetic counselors provide that depth of knowledge.”

Related: Specialty Medications And Managed Care Pharmacy

What health execs should know

According to See, here are the top five things healthcare execs should know about genetic counselors:

• Genetic counselors are certified professionals who have specialized training in medical genetics and counseling, making them uniquely able to address the educational and emotional needs of patients as they seek to understand the implications of genetic information for themselves and their family. 

• Genetic counselors are important care providers not just for persons affected with a hereditary disease, but also their healthy and potentially at-risk family members. “Genetic information is different from most other healthcare data, in that it impacts not just us, but our parents, children, and extended family,” See says. 

• There are approximately 5,000 genetic counselors in the United States, working in a variety of areas. Some genetic counselors provide broad general care, while others specialize in areas such as oncology, pediatrics, cardiology, neurology, ophthalmology, and reproductive medicine.

• Genetic counselors work in a wide variety of settings, ranging from more traditional hospital-based environments to laboratories and research programs.

• Telephone-based genetic counseling options are increasingly available, allowing providers and patients access to genetics expertise regardless of their physical location or size of practice.   

Genetic counselors can work with pharma companies along the entire clinical trials pipeline to develop more effective gene-based therapies, according to See.

“In the initial study design phase, genetic counselors can identify the most appropriate genetic test or panel to be included as part of trial, to optimize participant enrollment and patient/provider satisfaction,” See says. “This is critically important to ensure patients and providers needs are also being met as part of the clinical trial, and to help protect against delayed subject enrollment or lack of power due to low recruitment. Genetic counselors can also assist throughout the gene-based clinical trial by returning genetic information back to participants. Participants are eager to learn more about their genetic risks; therefore, whether or not a trial returns genetic test results may be an important factor the individual considers in deciding to participate in a particular clinical trial.

“However, the logistics of returning genetic risk information back to participants can present a real change to pharma companies and study sites; providers often have limited time and knowledge in the genetics space,” See adds. “Genetic counselors help solve this problem and, for this reason, are increasingly valued by pharma and biotech companies for the value they add to a clinical trial.” 

Challenges genetic counselors must overcome

Reimbursement continues to be a challenge. Genetic counselors are not recognized by CMS as healthcare providers, which limits access to genetics expertise for a large segment of the United States, according to See. 

“However, there is growing awareness at the government level of the need for certified genetic counselors to be recognized as healthcare providers and be reimbursed for services,” she says. “Although the Access to Genetic Counselor Services Act of 2019 was introduced to Congress, it has not yet been passed. Passing a bill granting the CMS the authority to recognize genetic counselors as such would constitute an important step forward to bringing the promise of genetics to every individual.”

Additionally, as the need for genetic counselor services continues to grow, training the next generation of genetic counselors becomes crucial to ensure our workforce is able to meet the increasing demand, according to See.

“The availability of telephone-based genetic counseling options is one way to meet this need, bringing remote genetic counseling services to all persons throughout the U.S.-from rural Alabama to New York City,” she says.

Tracey Walker is managing editor of Managed Healthcare Executive.