Danny Burgess, Adam Anderson take on genetic counselor shortage

State Sen. Danny Burgess and state Rep. Adam Anderson have filed legislation that would address a shortage of genetic counselors and strengthen the state’s capacity for advanced medical care and genetic research.

The identical measures (SB 1376 and HB 1115) would establish the Genetic Counseling Education Enhancement Grant Program within Florida’s State University System to support the development of American Board of Genetic Counseling-accredited graduate-level genetic counseling programs, to eliminate Florida’s status as a genetic counseling desert.

With just 179 licensed genetic counselors in the state, patient demand is not being met. Genetic counselors guide families facing complex genetic diagnoses, and they serve as essential partners in research, innovation and precision medicine.

“It’s not easy to develop expertise in the genetic field, and right now Florida simply doesn’t have enough trained professionals to meet the need,” Anderson said. “Genetic counselors are on the front lines, helping families navigate life-altering diagnoses and supporting breakthroughs in medical research and innovation. Financial barriers, on top of years of intensive training, should not stand in the way of Floridians willing to step into this critical role. By investing in education today, Florida can help solve a national shortage and ensure families here aren’t left behind.”

The issue is personal for Anderson. His son, Andrew, passed away from Tay-Sachs disease, an ultra-rare fatal genetic disorder with only 16 cases annually nationwide. There are more than 7,000 known rare diseases that affect some 350 million people worldwide, according to Anderson’s office.

Since his son’s death, Anderson and his family have been active in advancing research in rare diseases through the Cure Tay Sachs Foundation and their AJ Anderson Foundation. Anderson previously worked with former House Speaker Chris Sprowls to create Tay Sachs Awareness Day in Florida on Aug. 10, Andrew’s birthday.

Anderson successfully ran a bill (HB 907) last year, which Gov. Ron DeSantis signed in June, establishing the Sunshine Genetics Act. The Act authorizes the expansion of pediatric rare disease research and positions Florida as a national leader. It also established the Sunshine Genetics Pilot Program with $3 million in initial funding, laying the foundation for a new $100 billion genomic medicine industry in the state.

In 2024, Anderson successfully ushered through a bill (SB 1582) that created a grant program to fund scientific and clinical research on rare diseases.

Burgess will champion the latest effort to tackle genetic disorders in the Senate, saying this legislation is needed to grow Florida’s health care workforce.

“As medicine becomes more advanced and personalized, the demand for highly trained genetic counselors will only increase,” he said. “This legislation is about preparing Florida for the future by expanding educational opportunities, strengthening our health care workforce, and ensuring families across the state have access to the expertise they need without having to leave Florida for care.”

Doctors are praising the effort, with Dr. Pradeep Bhide, the director of the Florida State University (FSU) Institute for Pediatric Rare Diseases, calling it “a vital step toward building (the) genetic counseling workforce Florida families desperately need.”

“We are delighted to see Rep. Anderson continuing his important work to make Florida a national leader in developing new education programs to help patients and families understand the complex challenges surrounding genetic disorders,” added Dr. Charles J. Lockwood, executive vice president at USF Health and dean of the USF Health Morsani College of Medicine. “As the USF College of Public Health is home to the only accredited genetic counseling graduate program in Florida, we have a deep understanding of the need to expand the genetic counseling workforce in Florida and know that these grants will help patients and families across the state.”

The University of South Florida (USF) is currently the only Florida institution with an active genetic counseling program. FSU has a program in the approval process.

The measure would address key barriers to program growth, including faculty shortages, student financial constraints and limited access to clinical training sites. It would establish grant funds to recruit and retain qualified faculty and provide financial assistance to students. Institutions could not use funds for general administrative costs, to construct new facilities, or for non-program-related activities.

Additionally, participating universities would be required to maintain detailed compliance records and submit annual reports on expenditures and outcomes.

The bill, as currently written, does not include cost estimates or grant amounts.

If approved, the program would take effect July 1.