Sunshine Genetics Act Expands Newborn Screening to Hundreds of Treatable Genetic Diseases

By: Josh Baxt | March 12, 2026 | 9 min. read |

A new Florida pilot program co-led by the University of Miami Miller School of Medicine’s Dr. Pankaj Agrawal will use genomic sequencing to screen newborns for more than 750 treatable genetic conditions, enabling earlier diagnoses and life‑saving interventions.

Illustration of a close-up of a sample being precisely deposited onto a microarray.

For decades, babies have been screened soon after birth for rare, mostly genetic conditions. The screening occurs before symptoms appear to facilitate early, life-saving treatments. In Florida, infants have been routinely screened for around 60 conditions. However, there are approximately 7,500 rare genetic diseases.

To help fill this gap, the Florida Legislature recently passed, and Governor Ron DeSantis signed, the Sunshine Genetics Act, which establishes a five-year pilot program to create the Sunshine Genetics Consortium and potentially sequence 100,000 infants. Florida representative Adam Anderson, whose son, Drew, died in 2019 from Tay-Sachs disease, was instrumental in moving this legislation forward.

Miller School of Medicine pediatrician Dr. Pankaj Ageawal — Dr. Pankaj Agrawal says early newborn screening can identify issues — and potential therapies — for newborns and families.

“There are many treatable, early-onset conditions that do not have good newborn screening tests,” said Pankaj Agrawal, M.D., professor of pediatrics at the University of Miami Miller School of Medicine and physician-in-chief at Holtz Children’s Hospital, Jackson Health System. Dr. Agrawal is co-leading the consortium with David Ledbetter, Ph.D., a renowned geneticist at Florida State University. “Our goal is to better serve Florida’s children and families by screening for these genes so we can start treating these children much, much sooner.”

From Standard Screening to Genomic Sequencing

The Sunshine Genetics Consortium includes universities throughout the state and has recruited prominent scientists and clinicians to orchestrate the project. Mustafa Tekin, M.D., professor and chair of the Dr. John T. Macdonald Foundation Department of Human Genetics, and Jeffrey Brosco, M.D., Ph.D., professor of pediatrics and director of population health ethics, join Dr. Agrawal from the Miller School.

Dr. Mustafa Tekin, in white medical coat and tie — Dr. Mustafa Tekin

Dr. Jeffrey Brosco, in dark suit and patterned tie — Dr. Jeffrey Brosco

Consortium members will collaborate closely on a variety of issues, including patient privacy and ethical considerations. Still, their most important decisions will be choosing which genes to screen. Dr. Agrawal is leading that committee. Only a fraction of known genetic diseases are currently treatable.

“We’re coming up with a list of conditions, around 750 to start,” said Dr. Agrawal. “We need to always consider actionability, whether there are available therapies for that condition, so we can translate the sequencing results into timely treatments.”

Why Actionability Matters in Newborn Genomic Screening

Though the program will start with 750 genes, the team is constantly scanning the horizon for new developments. The consortium is also creating a second list of genes, including several related to epilepsy or hearing loss, that could eventually be added to the screening program.

This is a dynamic process, as new medicines are regularly being developed. The U.S. Food and Drug Administration recently approved a therapy for thymidine kinase 2 deficiency (TK2d), which can cause muscle weakness and breathing issues. An approved treatment means TK2d will be added to the screening protocol.

We want to give doctors and families the information they need, ASAP, to begin treatments and prevent damage.
Dr. Pankaj Agrawal

“My team and I will be actively reaching out to industry to spread the word about the program,” said Dr. Agrawal. “We want them to know that, if they are working on a rare disease drug, they should keep us informed. When it’s approved, we can add that gene to our list.”

Scaling a First‑in‑the‑Nation Pilot Program

While the pilot project is sequencing 100,000 patients, making Florida the first state to even attempt such a robust screening program, the ultimate goal will be to sequence every newborn in the state.

But even before the program has fully launched, people are getting in line to participate.

“There are families who are already asking for screening,” said Dr. Agrawal. “In some cases, they have a child with a rare disease and are concerned about their next baby.”

In addition to matching babies with approved treatments, these genomic diagnoses could help some families gain insurance coverage for expensive medications or access experimental medicines in clinical trials. Most importantly, screening data could help clinicians and families work proactively to prevent a disease’s worst effects.

“There have been cases where the treatment is as simple as a dietary change or vitamin supplementation, but the child needs to be diagnosed quickly,” said Dr. Agrawal. “If we wait too long, in some cases, no interventions will be effective. That’s really the bottom line for us. We want to give doctors and families the information they need, ASAP, to begin treatments and prevent damage.”