Genetic counselors would be barred from interpreting genetic tests under a bill passed by the Legislature that’s intended to prevent the relatively new profession from taking over a task traditionally performed by doctors.
The bill (S-555) is the latest in a series of measures addressing the legally defined scope of practice for doctors and other healthcare providers.
This form of counseling, which first appeared in the 1970s, help patients at risk of genetic disorders by providing information about these problems and by coordinating the requisite testing. These professionals are typically required to earn a master’s degree in genetic counseling. The state is in the process of establishing licensing and regulations for this specialty.
As with other rapidly changing areas of healthcare, doctors are concerned that genetic counselors do not encroach on services that they typically deliver.
Genetic counselors unsuccessfully sought an amendment to the bill that would have established collaborative agreements between counselors and doctors, similar to those between advanced practice nurses and physicians.
Doctors groups opposed the amendment, just as they opposed other efforts to expand the range of healthcare functions that nurses and other medical personnel perform.
While the Human Genetics Association of New Jersey ultimately supported the bill, officials said they would like to see the state establish collaborative agreements in the future.
Association President Elena Ashkinadze said the bill arose from concerns voiced by the state chapter of the College of American Pathologists that a 2009 regulation establishing the legal framework for genetic counseling would let its practitioners encroach on the work of pathologists in interpreting genetic tests.
The concerns in New Jersey reflect a national debate over the role that genetic counselors play. In 2011, national groups representing pathologists and genetic counselors reached an agreement that test interpretation would not be included in the counselors’ scope of practice.
That agreement may not have resolved the issue. Ashkinadze said that in many ways, “interpretation” of test results is “what we do.” For Ashkinadze and other counselors, their job includes helping patients understand what complex genetic test results actually mean.
However, the word “interpretation” has a specific medical meaning — the use of test results in reaching a diagnosis — and pathologists want to ensure that only doctors can make interpretations.
“We’re not going to use the word interpret,” Ashkinadze said, adding that genetic counselors direct patients to doctors when test results prompt medical concerns.
New Jersey has roughly 90 genetic counselors, many of whom work at hospitals.
Typically, doctors refer patients to genetic counselors when they are at risk of developing or passing on genetic disorders. For instance, a doctor may recommend genetic counseling for a patient with a family history of breast cancer. Similarly, a doctor may refer a pregnant woman for genetic counseling if her age or family history indicates an elevated risk of birth defects.
Counselors also help patients deal with the difficulties that can result from learning that they are at risk, such as how to inform relatives who may share the same genetic trait.
“Our job is to identify and coordinate the best genetic tests” for patients, Ashkinadze said. At times, that may mean helping patients decide that no test is necessary. She added that counselors also are trained to understand which tests will be most appropriate and cost-effective.
Bill sponsor Sen. Nia H. Gill (D-Essex and Passaic) said in a hearing last year that now is not the time “to expand the scope for genetic counseling.” She added that the bill doesn’t close the door to establishing collaborative agreements in the future.
Laurie A. Clark, legislative counsel to the College of American Pathologists in New Jersey, said the bill made a necessary adjustment to the 2009 regulation applying to genetic counselors.
“The bill was really designed to eliminate the conflict that existed between the practice of medicine and the practice of genetic counseling,” Clark said.
Dr. Louis Zinterhofer, chairman of Monmouth Medical Center’s department of pathology, expressed concern during a January 2012 hearing that the amendment sought by the counselors would have allowed them to interpret tests that are best handled by doctors.
“A genetic counselor assesses a genetic condition and serves as a consultant to physicians who ultimately determine what additional testing is necessary and what treatment is necessary,” Zinterhofer said.
Ashkinadze said during that hearing that doctors rely on the expertise of genetic counselors, who generally have received more training in genetics. “They’re actually seeking our advice to help better care for the patients,” she said.
While Ashkinadze said that the relationship between doctors and genetic counselors would be strengthened through collaborative agreements, that position was met with skepticism by Timothy J. Martin, a lobbyist for the Medical Society of New Jersey.
With advanced practice nurses, “ the relationship quite frankly has been that the collaborative agreement has diluted the relationship,” Martin said in the 2012 hearing. “APNs have sort of held themselves out to be primary care providers.”