TALHASSEE, Fla. (WFLA) — Signing the Sunshine Genetics Act has established Florida as a national leader in pediatric genetic medicine, but lawmakers and advocates say this is just the beginning.
After being signed by Governor Ron Desantis, the Sunshine Genetics Act will implement a five-year pilot program for newborns. Families can choose to sequence the family’s complete genetic codes for free.
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The goal is to catch serious, treatable genetic conditions before symptoms appear, providing access to family responses and care when timing is most important.
“It’s only a matter of time before that hope transforms into a treatment for rare diseases,” state representative Adam Anderson (R Palm Harbor).
Anderson led the bill after losing his son to Tay Sachs disease. He says momentum is already built beyond Florida.
“I have already reached out to me about half a dozen other states. They want to know what’s going on in Florida. They’re excited about the Sunshine Genetics Act. They want to bring Sunshine Genetics Act to other states,” Anderson said.
“I tell you, it was rough, it was rough for a few years,” PWSA | Director of Community Engagement.
Lantz, a national advocate and mother of children with rare diseases, says the national fight for better rare disease detection has been difficult, but the Sunshine Genetics Act allows Florida families to expect groundbreaking changes.
“Referring to Florida, “Listen, I know we’re working so hard to change the rarity, and I realise that when it affects 30 million Americans, it’s not rare,” Lantz said.
Supporters of the initiative have allowed them to open new doors, but there are lingering questions, especially regarding data privacy.
But Representative Anderson said Florida already has one of the most protective genetic privacy laws in the book.
“This genetic information is sensitive. We want to make sure it cannot fall into the hands of the wrong people, those who want to use it for harm or benefit.
The law not only launches a pilot program, but also establishes the Florida Institute of Pediatric Rare Diseases within Florida State University School of Medicine, laying the foundations for Florida’s new $100 billion genomic medicine industry.
Other University of Florida, hospitals and biotechnology leaders have joined the move, offering hope to families who have endured years of uncertainty otherwise.
