ACMG Faces Backlash for Stance on Bill That Would Allow Genetic Counselors to Order Tests

Jan. 16, 2020
Genetic counselors express frustration with ACMG letter dropping support for the Access to Genetic Counseling Act

A decision by the American College of Medical Genetics and Genomics (ACMG) board to withdraw support from House Bill, H.R. 3235, legislation that would allow genetic counselors to order genetic lab tests, drew a strong backlash from many genetic counselors.

On Twitter, genetic counselors expressed anger about the ACMG decision, with some saying they would boycott ACMG meetings or wear protest buttons there. One even suggested that clinical laboratory geneticists and genetic counselors “secede from ACMG and band together to create a true team-based and mutually respectful approach to medical genetics care without traditional MD-centeredness and dominance.”

ACMG is the only nationally recognized professional membership organization dedicated to improving health through the practice of medical genetics and genomics. In a Jan. 9 letter, Anthony R. Gregg, M.D., M.B.A., ACMG president, and Maximilian Muenke, M.D., its CEO, said “the ACMG cannot support any policies that would permit genetic counselors to practice medicine,” and they have long held that ordering medical tests, including genetic testing, constitutes the practice of medicine. “If H.R. 3235 is passed without appropriate scope of practice limitations, genetic counselors will receive reimbursement for carrying out activities that fall within the practice of medicine,” they wrote to U.S. Reps David Loebsack (D-Iowa) and Mike Kelly (R-Pa.), the bill’s sponsors. “For this reason, the ACMG can no longer support H.R. 3235 as currently written.”

Genetic counselors have become licensed and authorized to carry out some of these activities without restrictions in at least seven states, and similar licensure legislation is pending in several other states, the ACMG letter noted.

Genetic counselor Erica Ramos, M.S., L.C.G.C., director of clinical and business development at Geisinger National Precision Health, wrote on Twitter that ACMG is stating that all of these genetic counselors (GCs) should be supervised by geneticists. “That's neither necessary nor feasible given the distribution of GCs and the medical geneticist workforce, which doesn't have the numbers or the growth rate of the GC workforce,” she wrote.

Ramos also noted that genetic counselors are often used in testing utilization management roles to identify and correct inappropriate test orders from non-genetics experts who are mostly physicians.

The potential financial impact is huge, Ramos added. “Two National Society of Genetic Counselors-commissioned, independent analyses found enormous cost savings when genetic counselors optimize appropriate test selection and use of only those genetic tests having adequate supportive evidence.  How huge? These independent experts estimate the potential Medicare savings from better identification of correct genetic tests could be as much as $4 billion to more than $6.5 billion over 10 years. Sound crazy? A recent genetic testing fraud cost Medicare $2 billion.”

Ellen Matloff, M.S., C.G.C., the president and CEO of My Gene Counsel, was the founder and former director of the Cancer Genetic Counseling Program at the Yale School of Medicine.

A certified genetic counselor with more than 25 years of experience in the field, she has been the senior author on four published papers on errors in genetic testing, including errors due to the wrong test being ordered. She noted on Twitter that errors documented have resulted in patients having prophylactic surgeries they did not need, being diagnosed with late-stage cancers, and huge waste of healthcare dollars. “All of this because a genetics professional was not involved in the ordering process,” she wrote. “The ACMG is not supporting genetic counselors being able to order genetic tests, but this means that physicians, nurse practitioners, and PAs with little or no education and experience would be ordering genetic testing, especially since there are so few medical geneticists.”

Several genetic counselors questioned online why they should remain ACMG members. “If you were planning on going to ACMG 2020, cancel and let them know why,” one person wrote.

 “I certainly will not be a member of an organization who does not respect and value me for my expertise and dedication to quality patient care,” wrote Amy Curry Sturm, M.S., a professor and director of cardiovascular genomic counseling and a senior investigator at Geisinger’s Genomic Medicine Institute, on Twitter. “It's wonderful to see there are members of the ACMG who do not agree with the current leadership's stance. Genetic counselors will rise above!”

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