A Growing Need for Genetic Counselors

(this article was updated 4/19/2016 to include a response from Taya Fallen, MS, LCGC)

Shreshtha and Patrice

National Public Radio released an article this morning shining a light on an increasing problem within the genetics community: there are simply not enough genetic counselors to meet the current demands in the United States. As advances in the field of genetics have made testing for common genetic disorders during pregnancy and screening for hereditary cancer more easily available, we still face the dilemma of not having enough licensed and board-certified genetic counselors to provide the necessary pre-test counseling, assessments, interpretation of results, and follow-up counseling for patients. After reading the article, we posed a few questions to our genetic counselors to gather some opinions on the topic. Below are their views on the subject and a possible solution.

The author does a good job of detailing the genetic counseling process. What else about the counseling experience do you wish the article had covered?

Samantha Neumann, MS, LCGC: Genetic counselors can offer a wealth of knowledge, but the individual must first be open to receiving information that could be scary or might not be what they want to hear. Erika Stallings, the patient cited in the article, is a great example of a patient who was not initially ready to address her genetic risks until she had other aspects of her life in order. Learning that one may be predisposed to a genetic condition is certainly not easy. Waiting for test results, even when they ultimately come back negative, can be difficult as well. In addition to interpreting test results and what they mean on a genetic level, genetic counselors also help patients learn how to incorporate this information into their lives on a daily basis - whether that means altering treatment recommendations, deciding how to talk to their family about the results, or even just figuring out how they feel about the results themselves.

The article cited two main reasons for an increase in genetic counseling and testing since 2013, the Supreme Court’s ruling on patenting genes and the “Angelina Jolie effect”. How have these two incidences effected your experience as a genetic counselor?

Kathleen Dady, MS: Certainly both events have broadened the public understanding of genetic testing and genetic counselors as well as increased visibility of the field. In addition, it has shed light on the impact that genetic information can have on one’s treatment decisions and the course of one’s life overall. Genetic testing has become more financially accessible as technology has continued to improve. Where we would once have tested a single gene at a time, there are often tests available that assess dozens to hundreds of genes together. For many people, this leads to learning information about hereditary conditions that they may not have been able to investigate only a few years ago. The influx of information also increases the possibility of results that we are not yet able to interpret. Genetic counselors spend a lot of time thinking about the value that genetic testing can have in patients’ lives and whether more genetic information is necessarily helpful. The backbone to our profession is really the counseling and support genetic counselors provide that goes along with our ability to keep pace with the changing landscape of genetic technology.

Why are there currently not enough genetic counselors out there to meet the demands?

Taya Fallen, MS, LCGC: The increase in demand for genetic counselors can be attributed to a number of factors including increased media attention to genetic testing, a trend toward more patient-driven health care and advances in genetic testing that have lead to increased uncertainty in result interpretation. A Masters degree in Genetic Counseling typically takes two years to complete and requires both didactic classroom learning as well as hands on clinical training with other certified genetic counselors, followed by Board Certification. So, while the demand for trained counselors has been well noted both in and outside the genetic counseling community, the pace of training these experts requires time, which unfortunately for those who are waiting to be seen just can't move fast enough.

What can the genetic counseling community be doing to recruit more individuals to pursue this career?  

Tabitha Poorvu, MS, LCGC: The genetic counseling community is well aware of the workforce issues that are present currently. Many genetic counselors are committed to training the next generation of counselors. All of the counselors at Insight Medical Genetics are involved with the Northwestern University Genetic Counseling Program. Not only does Insight provide some genetic counseling interns with their first clinical experience and firsthand exposure to counseling patients, but we also focus on ways to grow the field. The number of genetic counseling programs continues to grow, and genetic counselors are actively thinking about the best way to increase the number of students without compromising the excellent education these programs provide. In the near future, the genetic counseling community hopes to meet the current need and expand the profession as genetic counselors fill more and different roles in the field of genetics.