GeneDx Joins Forces with Sunshine Genetics Act Pilot in Florida
GeneDx, a renowned genetic testing company, has been selected as the sequencing partner for the Sunshine Genetics Act pilot program in Florida. This initiative, launched in collaboration with the Florida Institute for Pediatric Rare Diseases, aims to revolutionize newborn screening in the state.
The Sunshine Genetics Act, enacted this summer, is a groundbreaking piece of legislation in Florida. It provides state funding for a five-year pilot program, allowing parents to opt-in for free DNA sequencing for their newborns. This program also established the Florida Institute for Pediatric Rare Diseases at Florida State University, marking a significant step forward in rare disease diagnostics.
The primary goal of the pilot program is to sequence at least 100,000 newborns in Florida, enabling early diagnosis of genetic conditions and treatment intervention. This approach has the potential to significantly improve health outcomes for newborns.
As part of this initiative, the institute is required to maintain a secure database of genetic screening data, provide clinical results to parents and healthcare practitioners, and facilitate (de-identified) data sharing for research purposes.
GeneDx, founded by two NIH scientists 25 years ago, brings a wealth of expertise to this project. With a vast database of genomic and exome data related to rare diseases, they are well-equipped to handle sequencing-based testing for rare diseases.
GeneDx's role extends beyond genomic testing and sequencing. They will also provide expert interpretation and clinical reporting services, ensuring comprehensive support for the program.
"We are honored to be a partner in Florida's groundbreaking Sunshine Genetics program," said Katherine Stueland, CEO of GeneDx. "This state-backed effort will offer genomic newborn screening for hundreds of conditions, ensuring that every newborn in Florida has the best chance to live a long and healthy life from the start."
Stueland further emphasized the program's potential, stating, "With the launch of this program, Florida is setting a powerful example for how clinical practice can utilize genomic newborn screening to identify actionable insights early enough to stop disease progression before symptoms ever appear."
It's worth noting that a similar project, the Generation Study in the U.K., is also government-funded and aims to sequence 100,000 newborns. Additionally, the Newborn Screening by Whole Genome Sequencing (NBSxWGS) Collaboratory initiative, funded through the NIH Common Fund, is exploring the integration of whole genome sequencing into existing state public health newborn screening programs in the U.S.
