How Accessible Are Genetics Providers and How Can Access Be Increased?

October 5, 2020 by Tatiana Garrison, Genetic Counseling Training Program Class of 2021, Emory University School of Medicine, Tina Truong, Genetic Counseling Training Program Class of 2020, Emory University School of Medicine, and Ridgely Fisk Green, Office of Genomics and Precision Public Health, CDC

The increase in clinical genetic testing, as well as direct-to-consumer testing, means a growing demand for genetic counseling services, which are often provided by genetic counselors. If patients are referred for genetic counseling, what barriers might they face in accessing these services? How can genetic counselors help address these barriers?

Lack of State LicensureCurrently, 26 states require genetic counseling licensure. State licensure ensures that genetic counselors who are trained through accredited programs and are certified through the American Board of Genetic Counseling are able to provide genetic counseling and order genetic testing. Currently, 21 states are in the process of requiring licensure.

Lack of Centers for Medicaid & Medicare Services RecognitionCurrently, genetic counselors are not recognized by the Centers for Medicare and Medicaid Services (CMS) as healthcare providers. This means that Medicare doesn’t reimburse for genetic counseling services from a certified genetic counselor. However, Medicare covers and reimburses physicians and nurse practitioners for genetic counseling when genetic testing is indicated. In other words, patients with Medicare cannot see a genetic counselor independently without seeing a physician or nurse practitioner unless they pay for the services out-of-pocket.

Long Wait TimesWait times to see a genetic counselor vary by specialty and location. The 2015 genetics professionals survey found that “wait times and average new patient caseloads have increased, while the number of geneticists has not.” Patients who need to see a physician or nurse practitioners along with a genetic counselor might have longer wait times. Being able to see a genetic counselor without a physician could increase access to genetic services for patients.

Fewer genetic counselors working in direct clinical careAccording to the NSGC 2020 Professional Status Survey (PSS), which had over 2,600 genetic counselors respondents from the U.S. and Canada, 25% of genetic counselors provided no direct patient care and 23% split their time, providing both direct patient care and working in commercial diagnostic laboratories, research, public health, or other roles. One model predicted that patient demand would not be met until 2030. The model estimated that genetic counselors who worked in direct patient care would decrease based on retirement or change of profession. What might be influencing this decline? On average, full-time genetic counselors in non-direct patient care positions earn about 35% more than those who work with patients. If more genetic counselors choose to go into non-direct care specialties, the number available to provide direct patient care will decrease.

Not enough genetic counselors working in rural areasIn the United States, 49% of the PSS respondents worked in California, New York, Pennsylvania, Texas, Massachusetts, Ohio, Illinois, Michigan, North Carolina, and Minnesota. 66% of respondents worked in large cities such as New York City, Boston, and Chicago. Rural areas lack counselors, which means that patients who live in rural areas may have to travel farther to see a genetic counselor. Physicians also may not refer their patients to a genetic counselor because there are none in the area.

Lack of Training ProgramsIn 2017, there were only 41 accredited genetic counselor training programs in the U.S. and Canada. As of 2020, that number has expanded to 48 in the U.S. and 4 in Canada. More programs are waiting to earn accreditation. As more programs earn accreditation, it is likely that more genetic counselors will be produced.

Lack of diversity amongst genetic counselorOf those who responded to the PSS, 95% were female and 5% were male. 90% of respondents identified as white non-Hispanic. Other races/ethnicities included Asian (5%), Asian Indian (3%), Hispanic/Latino (2%) and African American (2%). These demographics do not reflect the demographics of the patient population served. Counselors must continue to gain multicultural education to be better equipped with working with a variety of cultures and ethnic communities. During recruitment, programs can prioritize diversity to better reflect the population.

What are some ways certified genetic counselors help bridge the gap to access?

Educate stakeholders about barriers to access to genetic counseling servicesInforming stakeholders will bring awareness to the barriers that are hindering access to genetic counseling.

Educate nongenetic healthcare providers about when to refer patientsThere is a lack of genetics education in the training programs of other healthcare providers, which means that many providers do not feel equipped to assess whether a patient should be referred for genetic counseling. It important for other healthcare providers to know when to refer their patients to a genetic counselor.

Increase awareness, availability, and access for telehealth servicesIn one survey, National Society of Genetic Counselors (NSGC) members answered questions about genetic counseling service delivery models which included in-person, telephone, telehealth, and group genetic counseling. Respondents that used telehealth had increased from 2.3% in 2010 to 6.7% in 2017, indicating an increased frequency of the use of telehealth services. Increasing awareness of telehealth services among providers and patients and working to make these services available to more patients can increase use and make genetic counseling accessible to more patients.