Bill to expand newborn screenings, start new institute at FSU wins bipartisan support

A bill that would create a new optional genetic screening for newborns and establish a statewide center at Florida State University to help study genetic disorders for children advanced with bipartisan support during a Monday committee meeting.

HB 907 was passed by the House Health & Human Services Committee Monday with a 25-0 vote.

“It gives Florida a once-in-a-generation opportunity to lead the nation in genomic and precision medicine, and it formally establishes the Florida Institute for Pediatric Rare Diseases at Florida State University,” said bill sponsor Adam Anderson, a Republican from Palm Harbor. “It ends what we call the diagnostic odyssey for children who are born with genetic disorders.”

The bill appropriates $5 million to run the Institute for the 2025-26 fiscal year and $20 million for the five-year pilot program to expand the state’s newborn screening program to look from the 60 conditions currently to about 600 conditions. 

The voluntary Sunshine Genetics Pilot Program would provide the information from the screenings to parents and their health-care providers.

Anderson argued the money would be well-spent because 10,000 rare diseases affect 30 million people in the United States.

“It takes on average four to five years, plus seven or more visits to specialists, plus overnight stays in a NICU to diagnose a child with a rare disease,” Anderson said. “Sadly, many of these children pass away without receiving any meaningful treatment at all.”

The new institute within the Florida State University College of Medicine would help advance research for improved screening and treatments.

Better screening means better outcomes for children, he said, adding the bill has an economic value too. 

“It will position Florida as a hub for a $100 billion genomic medicine industry,” he said.

Dr. Paul Kruszka, Chief Medical Officer at GeneDx, a private company that does genetics testing, urged lawmakers to pass HB 907.

“With this bill, Florida can set the gold standard for genomic sequencing. I urge you to support this landmark legislation to make Florida the leader newborn screening,” Kruszka said.

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