Education
As Florida launches newborn genetic screening program, FSU institute leads statewide effort
This summer, Florida families will have the opportunity to enroll their newborns in a new genetic screening initiative designed to identify hundreds of rare genetic diseases before symptoms appear.
At the center of the effort is the Florida Institute for Pediatric Rare Diseases (Florida IPRD) at Florida State University, which the Sunshine Genetics Act designated to lead and coordinate the statewide program.
The program, known as Sunshine Genetics, aims to shorten what rare disease experts call the “diagnostic odyssey” by identifying genetic conditions shortly after birth rather than years later, when symptoms may already have caused irreversible damage.
For Rep. Adam Anderson, an FSU alumnus and Republican from Palm Harbor who championed the legislation after losing his son Andrew to Tay-Sachs disease, the goal is simple.
“My hope is that families will get the answers that they need and that babies born today won’t have to live that same nightmare of that diagnostic odyssey that I did and that so many families around the country do every day,” Anderson said.
“FSU had the pioneers. We just had to put them to work.”
— Rep. Adam Anderson, FSU alumnus and sponsor of the Sunshine Genetics Act
The Sunshine Genetics Program was established through legislation signed into law in 2025 that created a statewide framework for genomic newborn screening and designated Florida IPRD as the lead institution responsible for administering the pilot program.
“Florida State University is bringing together world-class researchers, clinicians and partners from across the state to help give children with rare genetic diseases the best possible start in life,” FSU President Richard McCullough said. “By leading the Sunshine Genetics Pilot Program, FSU is helping transform groundbreaking research into earlier diagnoses, more timely care and greater hope for families across Florida.”
Anderson said FSU’s expertise made it the natural home for the institute.
“We want Florida State and the Florida Institute for Pediatric Rare Diseases to be the destination for this type of work and this type of medical care,” he said. “The sophistication was already there, the experts were there, the recruiting was going really well to bring in the right professionals that had the ability and the skill set to lead a program like this that had really never been done in the country before.
“FSU had the pioneers. We just had to put them to work.”
Building a statewide program
Florida IPRD serves as the operational and scientific hub for the initiative. The institute oversees program administration, coordinates participating clinical sites, chairs the Sunshine Genetics Consortium and works with healthcare systems, industry partners and researchers across the state.
Dr. Pradeep Bhide, the Jim and Betty Ann Rodgers Eminent Scholar Chair of Developmental Neuroscience, director of the Florida Institute for Pediatric Rare Diseases and director of the Center for Brain Repair, said the institute’s role extends far beyond genetic sequencing.
“The program’s goal is not merely to generate genomic data but to ensure that clinically meaningful information can be translated into informed medical decision making,” Bhide said.
Dr. David H. Ledbetter, senior associate director for precision medicine at Florida IPRD and chair of the Sunshine Genetics Steering Committee, said the pilot was designed with families at its center.
“This is a state-initiated project to determine if genomic newborn sequencing can identify children with treatable rare diseases earlier in life, which could greatly improve their long-term health and well-being,” Ledbetter said. “We have substantial input from parents of children with rare genetic diseases guiding our patient education, consent and clinical follow-up protocols.”
