Florida Law Models What Genetic Disease Testing Could Be

Why It Matters

By shifting rare‑disease detection to birth, Florida could dramatically lower diagnostic delays and associated expenses, setting a precedent for nationwide precision‑medicine policies.

Key Takeaways

• Florida launches first state‑backed newborn genome screening
• Program targets 100,000 infants with opt‑in sequencing
• Early diagnosis could cut rare‑disease costs dramatically
• Other states watching Florida’s model for scalability

Pulse Analysis

Florida’s Sunshine Genetics Act marks a watershed moment in public health, moving genetic testing from a specialty service to a universal newborn offering. While most states rely on the federal Recommended Uniform Screening Panel’s 38 core conditions, Florida’s opt‑in whole‑genome sequencing expands the diagnostic net to thousands of rare disorders. By leveraging recent cost reductions—sequencing now averages $3,500—the program demonstrates that large‑scale genomic screening is financially viable, especially when blended with private funding and emerging Medicaid reimbursements.

The initiative also dovetails with evolving clinical guidelines. The American Academy of Pediatrics recently endorsed exome or genome sequencing as first‑line testing for developmental delays, a shift that could accelerate adoption among pediatricians. GeneDx’s partnership with the state underscores the importance of rapid turnaround—48‑hour results versus the historic five‑year diagnostic odyssey—enabling earlier interventions that can mitigate disease progression and lower lifetime care costs. Education efforts targeting primary‑care providers are critical to translating policy into practice.

Beyond Florida, the program offers a template for other jurisdictions seeking nimble, state‑level solutions to precision‑medicine gaps. By establishing the Florida Institute for Pediatric Rare Diseases and a collaborative consortium, the state creates an infrastructure for research, data sharing, and continuous improvement. As more states observe Florida’s outcomes, the model could catalyze a broader shift toward genomic newborn screening, reshaping the rare‑disease landscape across the United States.

Florida law models what genetic disease testing could be

By Brad Quick · Published Tue Feb 10 2026 6:00 AM EST · Updated Tue Feb 10 2026 12:43 PM EST

Key Points

• Florida state Rep. Adam Anderson championed the Sunshine Genetics Act, the first state‑backed genetic disease screening program in the nation.

• Anderson’s son, Drew, died in 2019 from Tay‑Sachs disease—a rare genetic metabolic disorder.

• Anderson said he hopes the program, which will screen newborns whose parents opt‑in, serves as a model other states can follow to expand access to genetic disease testing.

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In Florida, a new genetic disease screening program allows parents of newborns to receive free whole‑genome sequencing at birth, putting the state at the forefront of newborn screening.

The five‑year pilot program, created in July via the Sunshine Genetics Act, is paid for by a mix of private and state funding and requires parents to opt‑in to have their child tested. It is the nation’s first state‑backed genetic screening program.

The new law, passed unanimously in the Florida House of Representatives and Senate, was the result of a tireless campaign through the legislature by Rep. Adam Anderson, the Republican sponsor of the bill. For Anderson, whose son Drew died in 2019 from Tay‑Sachs disease, passage of the legislation was more than a political victory; it was affirmation that his decision to run for office would have an impact beyond what he initially envisioned.

“When I first agreed to run for office, I never intended on working on rare disease policy,” Anderson said. “But once I got elected, and I found myself serving on some health‑care committees, I realized the impact that we can have, and I also realized pretty quickly the lack of support for the rare disease community that existed in government.”

The program aims to sequence the genomes of 100,000 newborns. The bill also establishes the Florida Institute for Pediatric Rare Diseases at Florida State University, and the Sunshine Genetics Consortium, a Florida‑based network of universities and hospitals focused on expanding genetic research and testing.

“The Sunshine Genetics Act is a very exciting, transformative, truly landmark piece of legislation —[it’s] wild to think that, because it originated from my scribble notes on a cocktail napkin,” Anderson added. “It took about eight or nine attorneys to fix what I put on paper and make it actually something that could be voted on and passed, but it’s giving Florida a truly once‑in‑a‑generation opportunity to lead the nation in genomic and precision medicine.”

Precision medicine, sometimes referred to as “personalized medicine,” uses a person’s genetics, environment and lifestyle to help guide medical decisions.

The bill passed through the legislature of a conservative state with overwhelming bipartisan support.

“I think folks in other states are a little surprised that Florida beat them to this, which I find personally satisfying,” Anderson said. “But the reality is we’re not competing with these other states, right? This is a framework that I hope other states will adopt. I want other states to bring these kinds of programs there. This is not a Florida issue. It’s not a New York issue. It’s not a California issue.”

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The changing testing landscape

There is no federal law that requires insurers to pay for genetic testing for children without a demonstrated medical need. The Recommended Uniform Screening Panel, a list of disorders the Department of Health and Human Services recommends states screen for as part of universal newborn screening programs, covers only 38 core conditions. Thousands of rare diseases are not screened for until a child shows symptoms—often too late.

“So we’re trying to really change the course of diagnosis altogether,” said Katherine Stueland, CEO of GeneDx, a genetic‑testing company partnered with the Sunshine Genetics Act. “The earlier you diagnose, the earlier you have a world of options that can help prevent disease progression. And so it’s unconscionable that it takes five years for anyone to get diagnosed with a genetic disease. That’s the average. It’s five years today, and we can provide an answer in 48 hours.”

Some studies have shown that it can take even longer than five years for rare‑disease patients to receive a diagnosis. One study by the rare‑disease advocacy group EveryLife Foundation found that once rare‑disease symptoms begin, on average it takes more than six years for a patient to receive an accurate diagnosis. The same study estimated that families with delayed diagnoses spend an additional $86,000 – $517,000 per patient, depending on the disease, due to extra doctor visits, hospitalizations, and other health‑related expenses.

Early whole‑genome sequencing could help bring those costs down by identifying genetic diseases before they become symptomatic.

The cost of genetic testing has also fallen dramatically. A decade ago, whole‑genome sequencing cost tens of thousands of dollars; today GeneDx can perform it for about $3,500. More insurance plans and Medicaid programs are covering these costs—36 states have Medicaid coverage for exome and genome testing, and 17 states cover rapid genome sequencing.

“I think we’ve done the hard work to reduce our turnaround times, to reduce our costs, to deliver health‑economic data,” Stueland said.

Despite lower costs and broader coverage, awareness among general practitioners about when to use these tests remains low. Many prescribers don’t realize that the tests can often be done in a pediatrician’s office with a cheek swab.

That may be changing. In June, the American Academy of Pediatrics updated its guidance to recommend that pediatricians order exome or genome sequencing as the first‑line test for patients with global developmental delays or intellectual disabilities. It is the first time the AAP has issued such guidance since 2014 and could significantly shorten diagnostic timelines for rare‑disease patients. GeneDx is actively promoting this updated guidance.

“Step one for us is we’re really investing in education for pediatricians,” Stueland explained. “We have a massive educational investment to ensure that they know that the guidelines have been updated, and that genetic testing is not going to take months … it’s going to take a matter of days for us to get the information to them, and that insurance is paying for it.”

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A legacy for Drew

Enrollments in the Florida program, overseen by the Florida Institute for Pediatric Rare Diseases, will begin in March during baby‑well‑check visits at Tallahassee pediatric offices. Early in the second quarter, the program will roll out at Tampa General Hospital, which delivers about 6,000 babies a year, and is expected to expand to larger hospital systems.

Anderson said his goal is to scale the program across all of Florida and that representatives from other states have expressed interest in learning about it.

“Absolutely, it’s scalable nationally. Absolutely. We’ve built it. We have the template for this,” Anderson said. “It’s something that can be done at the state level. We don’t have to wait for the federal government to enact these kinds of policies. It’s hard to get things done in Washington, D.C. States can be much more nimble, and it just takes a champion.”

Anderson noted that while he hopes his son Drew would have been proud of the legislation, that is not his primary motivation.

“You know, a lot of times people will say, ‘Well, you’re doing this for your boy. It’s a legacy,’” Anderson said. “I suppose it is, but I’m doing it for the other kids. That’s really what motivates me.”

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