(C) Florida Phoenix This story was originally published by Florida Phoenix and is unaltered. . . . . . . . . . . Pilot program to provide free genetic testing gets OK from House education panel • Florida Phoenix [1] ['Christine Sexton', 'Jackie Llanos', 'Jay Waagmeester', 'Mitch Perry', 'More From Author', '- March', '.Wp-Block-Co-Authors-Plus-Coauthors.Is-Layout-Flow', 'Class', 'Wp-Block-Co-Authors-Plus', 'Display Inline'] Date: 2025-03-11 In what advocates believe could put Florida on the map as a leader in genomic medicine, a House Education panel on Tuesday gave the nod to a bill (HB 907) that would create the Florida Institute for Pediatric Rare Diseases (FIPRD) at Florida State University. The measure would appropriate $25 million to help get it off the ground and offer families access to have their newborns screened for up to 600 genetic conditions. Specifically, the bill requires the FIPRD to establish and administer the Sunshine Genetics Pilot Program, allowing parents to opt in their newborns for genetic screening including whole genome sequencing. Additionally, the bill, sponsored by Rep. Adam Anderson of Pinellas County, establishes what’s called the Sunshine Genetics Consortium to facilitate collaboration among researchers, geneticists, and physicians from Florida’s state universities and children’s hospitals. Anderson said the investment will help put Florida at the center of what he said could prove a “$100 billion genomic medicine industry in the coming years.” “It gives Florida a once-in-a-generation opportunity to lead the nation in genomic and precision medicine,” Anderson said. According to the National Cancer Institute, a genome is a complete set of DNA in an organism. In people, almost every cell in the body contains a complete copy of the genome. Studying the genome may help researchers understand how different types of cancer form and respond to treatment. FSU’s Institute for Pediatric Rare Diseases was established last year with the help of a $5 million commitment from legislators who included the funding in the state budget. Anderson, whose 4-year-old son Andrew died of Tay Sachs disease, was the impetus behind the institute, located in the FSU College of Medicine. As many 10,000 rare diseases afflict 30 million people across the United States, Anderson said. “Put that in perspective, it’s more than 10% of the population of our country and more than the population of Florida. So, while we call these diseases rare, when we look at them collectively they are actually pretty common.” Screening newborns HB 907 codifies into law the FIPRD and creates the pilot program. Anderson on Tuesday said that newborns in Florida are screened for 60 diseases. If tests come back positive, parents then go on what he called a “diagnostic odyssey.” The Sunshine Genetics Pilot Program will allow parents to test their children at no cost. “It’s not only the right thing to do for Florida families, it will save money,” he said adding that early diagnosis of diseases is a cost-saver and potentially a life saver. Dr. Pradeep Bhide, director of FIPRD, said that since its establishment last year the institute has awarded 23 research grants to FSU scientists across a number of colleges and disciplines. SB 1356, filed by Sen. Colleen Burton, is the companion measure. HB 907 heads to the Health & Human Services Committee, the Health Care Budget Subcommittee, and the Education & Employment Committee next. [END] --- [1] Url: https://floridaphoenix.com/2025/03/11/pilot-program-to-provide-free-genetic-testing-gets-ok-from-house-education-panel/ Published and (C) by Florida Phoenix Content appears here under this condition or license: Creative Commons CC BY-NC-ND 4.0. via Magical.Fish Gopher News Feeds: gopher://magical.fish/1/feeds/news/floridaphoenix/