Michigan would join nearly twodozen other states and begin regulating the emerging field of genetic counseling under a bill moving through the Legislature.
As the field of genetic medicine further emerges and more people undergo genetic tests to determine their health risks for disease or as part of treatments, the legislation would require genetic counselors working with patients to meet minimum licensing standards established by the state.
The legislation has the backing of health care advocates in Lansing who say state licensing was needed to ensure genetic counselors are qualified to work in the field and that patients receive accurate information and quality care.
Michigan presently lacks any state regulations or licensing requirements for the profession.
“It helps to recognize that profession and puts some standards for people that are in that profession,” said Laura Wotruba, director of public affairs for the Michigan Health & Hospital Association. “We think it will help the quality of health care patients ultimately receive in this arena.”
The bill, first introduced a year ago by Sen. Judy Emmons, a Republican from Sheridan, passed the Senate Health Policy Committee and now heads to the full Senate for consideration.
Twenty-two states now require licensing for genetic counselors who work with patients and their families.
In t estimony to the Health Policy Committee last September, Angela Trepanier of the Michigan Association of Genetic Counselors said state licensing for the profession could avert problems such as misinterpreting or misunderstanding genetic histories and test results. That could lead to a lack of treatment for patients, or unnecessary treatments.
Trepanier cited two cases in which patients received wrong information.
One involved a 50-year-old woman who underwent genetic testing for Huntington’s disease. The test indicated she was at risk for developing the neurological disease, but the result was misinterpreted and she was told otherwise. She didn’t learn of the error until six years later, when she developed symptoms, said Trepanier, who’s also an associate professor at Wayne State University where she directs the genetic counseling program.
In the other case, a 40-year-old woman self-referred to a genetic counselor and tested positive for a cancer mutation. She went to the genetic counselor after a previous test ordered by her primary care doctor indicated she did not have an increased risk for cancer, a finding that was in contrast to her family history.
An MRI, performed after the genetic test showed she was at risk, found she had developed breast cancer. The delay in ordering the proper test may have led to a delay in diagnosing and treating her cancer, Trepanier said.
State licensing for genetic counselors “would protect our citizens from the potential harm of receiving inaccurate information about genetic risks that can occur when genetic information is provided by individuals who do not meet minimum education and certification standards,” Trepanier said in testimony submitted to the Health Policy Committee last October.
“It would assure that minimum education, continuing education and certification standards have been met by individuals using the title of ‘genetic counselor,’” she said.
As of 2016, 3,100 genetic counselors were working in the U.S. and earning a median salary of $77,480, according the U.S. Bureau of Labor Statistics. The agency projects the field to grow 29 percent from 2016 to 2026, or by 900 positions.
About one-third of genetic counselors in the U.S. work at hospitals, according to the Bureau of Labor Statistics. Another 20 percent are employed by physician practices, and 18 percent are at medical and diagnostic labs.
As of last fall, 124 certified genetic counselors worked in Michigan, according to Trepanier. Through graduate programs, counselors have “significant training” in human and medical genetics, patient education, and counseling.
Nationwide, there are 37 accredited graduate programs in genetic counseling, including at Wayne State University and the University of Michigan, she said.
GENETIC COUNSELORS, DEFINED
Legislation passed by a state Senate committee to require licensing for genetic counselors defines the profession as:
- Obtaining and evaluating individual, family, and medical histories to determine the genetic risk for genetic or medical conditions or diseases in a client, the client’s descendants, or other family members of the client.
- Discussing with a client the features, natural history, means of diagnosis, genetic and environmental factors, and management of the genetic risks of genetic or medical conditions or diseases.
- Identifying and coordinating appropriate genetic laboratory tests and other diagnostic studies for genetic assessment of a client.
- Integrating genetic laboratory test results and other diagnostic studies with personal and family medical history to assess and communicate a client’s risk factors for genetic or medical conditions or diseases.
- Explaining to a client the clinical implications of genetic laboratory tests and other diagnostic studies and their results.
- Evaluating the responses of a client and the client’s family to a genetic or medical condition or disease and providing client-centered counseling and anticipatory guidance.
- Identifying and using community resources that provide medical, education, financial and psychological support and advocacy to a client.