TALLAHASSEE, Fla. (WFLA) — With the signing of the Sunshine Genetics Act, Florida has positioned itself as a national leader in pediatric genetic medicine, but lawmakers and advocates say this is only just the beginning.

After being signed by Governor Ron DeSantis, the Sunshine Genetics Act puts in place a five-year pilot program for newborns, where families can opt in to have their baby’s full genetic code sequenced, free of charge.

The goal is to catch serious but treatable genetic conditions before symptoms even appear, offering families answers and access to care, when timing matters most.
“It’s just a matter of time before that hope is transformed into cures for rare diseases,” said State Representative Adam Anderson (R-Palm Harbor).

Anderson led the bill after losing his son to Tay Sachs disease. He says momentum is already building beyond the state of Florida.

“I’ve already had about half a dozen other states reach out to me. They want to know what’s going on in Florida. They’re excited about the Sunshine Genetics Act, they want to bring the Sunshine Genetics Act to other states,” Anderson said.
“I will tell you; it’s been a rough, it’s been a rough few years,” said Dorothea Lantz, PWSA | USA Director of Community Engagement.

Lantz, a national advocate and mother to a child with a rare disease, says the national fight for better rare disease detection has been difficult, but with the Sunshine Genetics Act, Florida families can expect groundbreaking change.
“I think being able to point to the state of Florida and say, ‘Listen guys, you know we’re working so hard to change rare, and recognize that rare isn’t rare when it affects 30 million Americans’,” said Lantz.

Backers of the initiative acknowledge it opens new doors, but with it comes lingering questions, especially around data privacy.

However, Representative Anderson said Florida already has one of the most protective genetic privacy laws on the books.
“This genetic information is sensitive, we want to make sure that can’t get into the hands of the wrong people, people who may want to use it for harm or profit, that’s not what the Sunshine Genetics Act is about,” Anderson said.

The Act not only jumpstarts the pilot program, but it also establishes the Florida Institute for Pediatric Rare Diseases within the Florida State University College of Medicine and lays the foundation for a new $100 billion genomic medicine industry in Florida.
Other Florida universities, hospitals, and biotech leaders have joined the move, offering hope to families who may have otherwise endured years uncertainty.