Latest news with #SunshineGeneticsAct
Forbes
14-07-2025
- Health
- Forbes
Rewriting Genetic Fate: Universal Newborn Genomic Screening Arrives
Tiny baby in grey clothes sleeps on woolen blanket In Destiny's Child No Longer: Rewriting Genetic Fate, we envisioned a world where every newborn would be screened for genetic risks. We see a future in which the randomness of genetic inheritance could be met with knowledge, preparation, and, ultimately, intervention. Today, that vision is rapidly becoming reality on both sides of the Atlantic. The United Kingdom's National Health Service (NHS) has announced a landmark plan to offer whole genome sequencing to every newborn. At the same time, Florida's Sunshine Genetics Act has set the stage for a statewide pilot of newborn genomic screening. These developments are a shift in public health. They stand to transform the diagnosis, prevention, and treatment of rare diseases for generations to UK's Ambitious National Rollout The NHS's new initiative will, over the next decade, provide every newborn in England with comprehensive DNA analysis. This effort builds on the success of the Generation Study. This program sequenced the genomes of 100,000 infants to screen for over 200 rare, treatable genetic conditions. The government has committed £650 million to this program, aiming to move beyond the current heel-prick blood test—which screens for just nine conditions—to a system capable of detecting hundreds of single-gene disorders and risk factors for complex diseases. The program is shifting the NHS from reactive care to proactive, personalized healthcare. By identifying disease risks at birth, the NHS hopes to reduce the burden of illness and extending healthy lifespans. The UK's ambitious newborn genome sequencing program is set to make every newborn in England eligible for whole genome sequencing by 2030. This comprehensive framework positions the UK as a global leader in genomic medicine. Furthmore it is setting a precedent for how large-scale, ethically responsible genetic screening can be integrated into national healthcare systems for the benefit of future Sunshine Genetics Act: A U.S. Model Emerges Across the Atlantic, Florida has surged to the forefront of rare disease research with the passage of the Sunshine Genetics Act. Signed into law in July 2025, this legislation launches a five-year pilot program to sequence the genomes of newborns statewide. The Act allocates $3 million to the Sunshine Genetics Pilot Program. It establishes the Florida Institute for Pediatric Rare Diseases at Florida State University, with additional funding from both state and university sources. The program also focuses on ensuring participation remains voluntary and contingent upon parental consent. The Sunshine Genetics Consortium, formed under the Act, unites leading researchers, clinicians, and biotech innovators from across Florida's top institutions. Their mission: to accelerate diagnosis, pioneer new treatments, and end the diagnostic odyssey faced by families affected by one of the more than 7,000 rare diseases impacting 30 million and Future Directions The initiative by the UK and Florida represents a true shift, one that we predicted, in how we approach disease. Early results from multiple studies have shown that genome sequencing can identify actionable conditions and diseases. Furthermore, genome sequencing can identify these conditions far sooner than traditional screening methods. This enables interventions that can alter the course of a child's life. That said, the path to this new approach is not without challenges. As always, there are ethical concerns to address, including consent, privacy, and the potential for genetic discrimination. All these concerns require oversight, thought, and care. Additionally, equitable access to these technologies is another concern, which is important globally and will remain a pressing issue as new technologies emerge. Ongoing research and public dialogue will be essential to ensure that the benefits of genomic medicine are realized for the Science Consider the story of a family whose newborn was diagnosed with a rare metabolic disorder through genomic screening, years before symptoms would have appeared. Early intervention allowed for dietary modifications that prevented irreversible neurological damage. Stories like these are increasingly common as these programs expand. They underscore the human impact of scientific progress. As predicted in Destiny's Child No Longer, the era of universal newborn genomic screening is dawning. The UK and Florida are leading the way. They demonstrate both the promise and the responsibility that comes with rewriting genetic fate. Their experiences will inform global efforts. They will shape a future where every child's genetic destiny is not only known but can be changed for the better.
Yahoo
10-07-2025
- Health
- Yahoo
Florida leaders celebrate advances in pediatric genetic medicine
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 implications are frightening': Cybersecurity experts weigh in following AI impersonation Marco Rubio 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 universities, hospitals, and biotech leaders have joined the move, offering hope to families who may have otherwise endured years uncertainty. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
14-03-2025
- Health
- Yahoo
‘Sunshine Genetics Act' aims to advance care and research for rare diseases
TALLAHASSEE, Fla. (WFLA) — With thousands of rare diseases affecting millions of families worldwide, one Tampa Bay lawmaker is taking action to position Florida as a national leader in genetic medicine. State Representative Adam Anderson is making it his mission to ensure no family has to face the uncertainty and heartbreak that comes with a rare genetic diagnosis. Dubbed the 'Sunshine Genetics Act' Representative Anderson, R-Palm Harbor, wants to improve early diagnosis and treatment of rare diseases in newborns. 'It's like roulette': Pinellas hotel owner concerned over abrupt deadline for FEMA housing help After unanimous bipartisan support and positive debate, House Bill 907 passed its first committee stop, with three more committee stops to go. Anderson is already looking to expand the reach of the rare disease pilot program. 'There's as many as 10,000 of these rare diseases. Very few of them have actionable treatments, but one of the really exciting things about Sunshine Genetics is that we'll be able to screen for as many as 600 of these conditions that do have actionable treatments,' Anderson said. The bill would launch a pilot program offering genetic testing for newborns, in addition to the state's existing screening program. It would also establish a network of clinical academic research professionals, children's hospitals, and Florida universities to advance research, diagnosis, and treatment. Amderson shared with 8 On Your Side that there are two different funding components being proposed right now. The first is a $5 million recurring funding for the Florida Institute for Pediatric Rare Diseases at FSU. They'll receive funding and support from the state to continue their research efforts and to continue building out their pediatric clinical Health Center to support their CLIA certified lab. The other component is a onetime funding of $20 million specifically to watch the Sunshine Genetics pilot program. 'The inspiration comes from my son Andrew, he unfortunately passed away when he was four years old. He had a very rare, what they call an ultra-rare genetic disorder, called Tay Sachs Disease and there's no treatment for that,' Anderson said. With personal ties to this initiative, Anderson knows firsthand the heartbreaking impacts of losing a child to a rare disease.'Being involved so much with these families is a little bit of a double-edged sword for me, and I say that because it's hard for me personally to interact with them because I understand what they're going through. I can relate to it. I am one of those parents and I always will be. But that's also the motivation, that's why we do it,' Anderson said. With high hopes the legislation will continue to garner support, Anderson says this program is a step in ending the diagnostic odyssey so many Floridians find themselves in. 'Representative Anderson, you poured your heart and soul into this bill,' said State Representative Dean Black, R-Jacksonville. 'Seldom do we get a chance to truly change lives and thereby change the world, Representative Anderson, your bill changes the world. And for that bill, I thank you.' 'You put a lot of work into the bill, but you also ensure that it's not an unfunded mandate. You make sure that money is appropriated in this good bill. I really appreciate what you are doing to eliminate the burden for families,' said Marie Paule Woodson, D-Hollywood. The program will run through Florida State University, with the hopes to further expand it to other universities here in the state. 'My hope for this is that over the next year or two, the pilot that's run through FSU will be very successful, and then our other universities that are members of the consortium like the University of Florida, USF, University of Miami and others can then bring this model to their university and then all coordinate and collaborate on the research,' Anderson said. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
