The last few times I told someone I’d just met that I’m a genetic counselor, I got similar responses: “wow! that sounds interesting!”… long pause… head tilts slightly, “what do you do exactly?”
It’s not surprising that most people don’t know what genetic counselors do. According to the ABGC, there are only 4,000 board-certified genetic counselors, most of whom work in large medical centers.
A future post is in the works, but briefly, genetic counselors are board-certified, masters-level health care providers who usually work as part of a multidisciplinary team. Genetic counselors may oversee physicians’ orders for genetic tests or work for commercial labs in customer service, result reporting and sales.
While it may not be the first thing you think of, genetic counselors also play a key role in reducing a hospital’s liability. This is significant not only because genomics is rapidly growing, but it’s also an area in which most providers lack expertise.
Determine the right test for a patient.
There are over 68,000 genetic tests for over 5,000 disorders in the GeneTests database. Many of these tests are only recommended for patients who meet specific criteria. Some are investigational. As part of the health care team, genetic counselors help physicians evaluate the quality and cost-effectiveness of genetic tests. The risk exposure and unnecessary costs associated with this are huge, as it’s been reported that up to half of genetic tests are the wrong test or should not have been ordered at all.
Know the latest professional guidelines.
Professional guidelines are always evolving. While many recommend referral to a genetics expert for certain indications, professional societies such as ACOG, NCCN and AAP also have criteria for the appropriate use of genetic tests. Genetic counselors are responsible for keeping up with frequent changes to guidelines and using them in their practice.
Deliver patient-centered care.
Genetic counselors are skilled at assessing risk, collecting sensitive information, explaining complicated topics, and discussing the risks, benefits and limitations of a patient’s options. We take a nondirective approach to obtaining informed consent. Fundamental elements of genetic counseling include empathy, good communication, and respect for autonomy, all of which have been shown to reduce lawsuits.
Genetic test results are often complex. In 2014, researchers at Yale School of Medicine reported on 35 cases in which patients did not see a genetic counselor and had adverse outcomes. (The publication’s senior author, Ellen Matloff, has since founded My Gene Counsel, a digital health company that seeks to address this problem.) While they did not prove causation, the consequences of misinterpreting a genetic test result can be devastating. Unnecessary surgeries, cancer in people in whom it could have been prevented, death due to the administration of contraindicated medications and other types of medical malpractice have occurred when genetic test results are not interpreted correctly.
Risk management is a major concern for hospital administrators. With genomics making its way into general practice, genetic counselors are a valuable asset whose skills help hospitals reduce their exposure in the complex and dynamic area of genomic medicine.
Next up: Ways Genetic Counselors Save Hospitals Money.
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