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Newborn genome sequencing program at TGH
The Sunshine Genetics Newborn Screening program officially launched last week with its first two enrollees. FOX 13’s Kellie Cowan reports.
TALLAHASSEE, Fla. - Florida has launched a newborn genomic screening pilot program designed to test babies for more than 900 genetic conditions, making it the first state-funded initiative of its kind in the nation.
Sunshine Genetics newborn screening program launches
What we know:
Florida’s Sunshine Genetics newborn screening program has officially launched, with the first two families choosing to have their newborns participate in the voluntary pilot.
The program, administered by the Florida Institute for Pediatric Rare Diseases at Florida State University, uses whole-genome sequencing to screen newborns for roughly 900 genetic conditions.
"When we first started putting this on paper, there were a lot of people who told me there was no way we would get to that many conditions. The goal was 600 conditions, and once we got the brilliant minds in science and genetic experts involved, that list quickly got up over 900 conditions," said State Representative Adam Anderson (R-Pinellas), who authored the Sunshine Genetics Act, which was passed in 2025.
The goal is to identify rare diseases earlier, reduce years-long diagnostic delays, and connect children with treatment or specialized care before symptoms cause irreversible damage.
"It could take five to seven years without a screening program like this just to get to the right answer, and many times, especially when we’re talking about children, the disease may have progressed so far that there’s really nothing that can be done once you finally know what's going on," explained Anderson.
Florida hopes to become the first state in the country to offer such expansive newborn screening statewide. Sunshine Genetics is the only newborn genomic screening program initiated and funded by a state legislature, with the goal of determining whether it should eventually expand to all babies born in Florida.
Parents and legal guardians voluntarily enroll their newborns through a digital education and consent process.
The program uses the same blood sample collected for Florida’s standard newborn screening test. No additional blood draw is required.
Florida’s standard newborn screening program checks for roughly 60 conditions. Sunshine Genetics expands that effort by looking for genetic changes associated with nearly 900 conditions.
Rapid DNA results and medical follow-up options
What we know:
Baylor Genetics will serve as the program’s lead whole-genome sequencing provider at launch. The company is expected to complete sequencing, analysis, and clinical interpretation within four to six weeks.
Families who receive a screen-negative result will be notified electronically. If a potential genetic condition is identified, a Sunshine Genetics clinician will contact the family by phone to explain the result and discuss confirmatory testing and follow-up care.
That follow-up could include referrals to medical specialists, dietitians or other health care professionals.
The initiative is being led by the Florida Institute for Pediatric Rare Diseases at FSU’s College of Medicine, with support from Baylor Genetics, GeneDx, Nest Genomics and Amazon Web Services.
"This is a state-initiated project to determine if genomic newborn sequencing can identify children with treatable rare diseases earlier in life," said David Ledbetter, senior associate director of precision medicine at the institute and chair of the Sunshine Genetics Steering Committee.
Unclear statewide timeline and hospital participation
What we don't know:
It is still unclear when the program will become available throughout the state and which hospitals will participate. Tampa General Hospital was originally designated to be the first hospital to offer families the free, optional whole-genome sequencing, with expansion to Orlando and Miami later in 2026.
It is also too early to know how many positive results the pilot will produce and how earlier identification may impact treatment plans for affected children.
"The Sunshine Genetics pilot is unique in the United States as the only project initiated and funded by the state legislature, with the express goal of generating evidence to determine whether this should be expanded to benefit all 225,000 babies born each year in Florida," said David Ledbetter, Ph.D., IPRD’s senior associate director of precision medicine who chairs the Sunshine Genetics Steering Committee.
State Rep. Adam Anderson champions rare disease law
The backstory:
Florida lawmakers created the Sunshine Genetics program through legislation championed by state Rep. Adam Anderson, R-Palm Harbor.
Anderson pushed for the program after his son, Andrew, died from Tay-Sachs disease, a rare disease that is not on the current newborn screening panel.
As Anderson explains, the program could help other families avoid the "diagnostic odyssey" many families experience.
"So many families find themselves in a situation where they spend years visiting specialists and searching for answers," said Anderson. "The cost of an undiagnosed disease is tremendous. The cost per child to be in this diagnostic odyssey that can last five to seven years trying to get answers is over $500,000 per child."
The program is designed as a pilot that could eventually determine whether genomic newborn screening should be offered to all babies born in Florida.
Early genetic testing prevents permanent damage
Why you should care:
Rare genetic diseases can be difficult to identify because newborns may appear healthy before symptoms begin.
Earlier diagnosis could give doctors more time to use specialized diets, medications, supplements, clinical trials, or gene therapies. In some cases, treatment may prevent or reduce permanent neurological or physical damage.
The program also creates a statewide data resource intended to support research into pediatric rare diseases. Program leaders say participant data will be protected and used for research in accordance with privacy safeguards.
Florida’s pilot is expected to help determine whether whole-genome sequencing can become part of routine newborn care across the state.
Sunshine Genetics is unique in the United States because it is the only newborn genomic screening program initiated and funded by a state legislature, with the goal of determining whether it should eventually expand to all babies born in Florida.
Genetic screening by the numbers
By the numbers:
- 4-5 years Average time is takes for a child to be diagnosed with a rare disease
- 1 in 10 Americans affected by rare diseases
- 80% of pediatric rare diseases are genetic
- $500,000 The amount Anderson says this program could save, per child, in unnecessary medical expenses.
General enrollment scheduled for spring 2027
What's next:
General enrollment is anticipated to begin in spring 2027. Check the Sunshine Genetics website for updates: https://floridasunshinegenetics.org/.
The Sunshine Genetics team will continue developing enrollment, laboratory, results-disclosure and follow-up procedures as the program expands.
The long-term goal is to use the pilot’s results to evaluate statewide expansion. About 225,000 babies are born in Florida each year.
The Source: This article is based on an Oct. 5, 2026, announcement from the Florida Institute for Pediatric Rare Diseases at Florida State University, interviews with Adam Anderson, related information from FSU, and earlier FOX 13 reporting.