Written by: Gwen Gunn and Patricia Z. Page
Media contact: Adam Pope
Genetic counselors are health care professionals with specialized training in medical genetics and counseling.Recently, our country saw an incredibly rare event — the introduction of a bipartisan bill.
The bill — H.R. 7083 “Access to Genetic Counselor Services Act of 2018” — would allow certified genetic counselors to be recognized as health care providers through Medicare. As we have seen with the recent controversies of genetic testing being used by Elizabeth Warren to confirm her ancestry, and by law enforcement to solve an increasing number of cold cases, genetic testing can be complicated.
This bill could not have come at a better time.
Genetic information and technology are growing so rapidly that many specialists in other fields have difficulty keeping up, much less the public. It has been a mere 65 years since the structure of DNA was first described. Reviewing a picture of one’s chromosomes under a microscope was essentially the only “genetic” test available until the early 1980s.
Today, next generation sequencing (NGS) technology, which became clinically available around 2008, is a rapid and cheap technique for evaluating many genetic changes at one time. This technique has directly led to the explosion of genetic testing options, utility and complexity. According to Concert Genetics, there are approximately 10 new genetic tests to choose from every day. There are techniques that look at the entire genome, single genes, panels of selected genes, deletions or duplications of DNA, and changes in whole chromosomes. The sheer variety of options is daunting.
Doctors from a wide range of backgrounds have the freedom to order genetic testing. However, doctors not explicitly trained in genetics do not always understand different testing modalities, the potential test results or their implications. Negative consequences can include increased patient distrust of the medical system, wasted health care dollars, decreased treatment compliance and even potential lawsuits.
Enter genetic counselors.
Genetic counselors are health care professionals with specialized training in medical genetics and counseling. Genetic counselors are trained to fully explain and explore the concepts of genetic testing and genetic test results with patients, as well as potential psychosocial issues inherent in genetic diagnostic information. Additionally, genetic counselors are tasked with understanding the various testing technologies available, test costs, insurance coverage, diagnostic yield and potential results.
Currently, Medicare patients have difficulty gaining access to the specialized services of genetic counselors and must look to other health care professionals to pursue and interpret genetic testing. If H.R. 7083 becomes law, genetic counselors would be allowed to bill Medicare for their services, increasing access for patients and helping to secure the financial viability of the profession at a time when more genetics and genomic expertise is desperately needed.
There is an existing argument that health care professionals as a whole need to increase their awareness and understanding of genetic techniques and concepts. We agree that, just as we are better than our parents are at navigating the internet, so modern day health care professionals should have a more thorough understanding of genetics than did their predecessors. However, the solution is not for all of us to become expert computer programmers. Requiring that all providers and the public possess an in-depth understanding of genetics and genetic testing will only decrease health care access and increase health care disparities.
Genetic counselors represent a unique resource for the public, patients and other medical professionals and should be more fully incorporated into the health care setting. The solution is to continue to increase the presence and legitimacy of genetic counselors as genetic specialists in the health care system and facilitate reimbursement for their services. Passage of H.R. 7083 would be a huge step in the right direction. Everyone would benefit, regardless of whether he or she is a Republican or a Democrat.
Gwen Gunn is a second-year genetic counseling student at the University of Alabama at Birmingham. She holds a Ph.D. in cell, molecular and developmental biology from UAB.
Patricia Z. Page is a genetic counselor and is the program director of the Master of Science in Genetic Counseling program in the UAB School of Health Professions. The Genetic Counseling program at UAB is fully accredited by the Accreditation Council for Genetic Counseling.
The opinions expressed in this article do not necessarily reflect the views of the University of Alabama at Birmingham.