The field of genetic counseling has expanded rapidly over the last few decades. As the field of genetics grows, more and more genetics providers are needed in various areas of health care. With that demand, genetic counselors are expanding into those health care fields, but there continues to be a shortage. Why is it important to have access to genetic counseling? What if someone needs genetic counseling but there are no genetic counselors or other genetic providers in your area?
Genetic counselors can help bridge the gap between patients and health care providers by providing essential services to empower a patient to make decisions regarding his or her health care. A genetic counselor is specifically trained in medical genetics- which allows them to provide accurate knowledge regarding a patient’s need for genetic testing, where to get genetic testing, and what type of genetic testing is important to pursue. In addition, a genetic counselor is trained in helping patients with decision making. For example, decisions regarding if a patient should or should not pursue testing if they should discuss their genetic knowledge with their family, or decisions regarding a pregnancy. To further help with decision making, a genetic counselor is trained in nondirectiveness- an ethical principle that genetic counselors use to help patients utilize their autonomy. This type of counseling helps patients gain the knowledge they need to make the best decision for themselves and their family.
There are several reasons why a patient might face difficulty in accessing genetic counseling services. There are currently 48 genetic counseling training programs in the United States. This number has grown since 2017, and programs are attempting to expand the number of students they can accept. However, this number of programs is not enough to meet the demand for genetic counselors in the country. In addition, of the genetic counselors produced from these programs, 25% provide no direct patient care and 23% split their time between direct patient care and other health care roles such as research, public health, or commercial diagnostic laboratories. National Society of Genetic Counselors (NSGC) predicted that patient demand might not be met until 2030.
Of the genetic counselors working inpatient care, there are not many genetic counselors working in rural areas. 66% of genetic counselors reported on the NSGC professional status survey that they work in large cities. It’s also less likely that a physician would refer a patient to a genetic counselor if there is no access to a genetic counselor in their area. As a result of a lack of genetic counselors, patients often have long wait times to see a genetic counselor.
NSGC is currently trying to work with Medicaid and Medicare services to recognize genetic counselors as health care providers. For patients with these types of insurance, this means that they would have to pay out of pocket to see a genetic counselor. There are also currently only 26 states that require genetic counseling licensure, with 21 states in the process of requiring licensure. State licensure means that patients who receive genetic counseling are being seen by a genetic counselor who was trained through an accredited program and is board certified.
What can be done to bridge the gap to access genetic counselors? Nongenetic healthcare providers need to be educated on the importance of genetic counseling and when to refer their patients to genetic counseling. In addition, educating stakeholders about the lack of access to genetic counseling will help move forward accessibility.
Last, we can increase awareness of telehealth services. There are currently more genetic counselors working via telehealth than previously reported in 2010. Advanced Tele-Genetic Counseling is currently attempting to reach rural areas and provide genetic counseling to areas that would otherwise have no access. If you are in need of genetic counseling, whether you are a patient or a health care provider, please contact AT-GC to receive access to genetic counseling services.
Goetsch, A, Volk, A, and Woodruff, TK. Chapter 7: Genetic Counselors: Bridging the Oncofertility Information Gap. (2014). Oncofertility Communication. Springer: New York.