Ep108: Newborn Screening and Florida's Sunshine Genetics Act

Representative Adam Anderson joined the podcast to discuss newborn screening and the Florida Sunshine Genetics Act, Florida’s innovative voluntary research program using whole-genome sequencing as an additional newborn screening tool. The program, developed in collaboration with the Florida Institute for Pediatric Rare Diseases at Florida State University and other leading research and medical institutions, offers eligible Florida families the opportunity to screen their newborns for approximately 900 childhood-onset genetic conditions—many of which may benefit from earlier identification, intervention, monitoring, or treatment.

Our Director of Community Engagement, Dorothea Lantz, who serves as Chair of the Sunshine Genetics Community Advisory Board and was involved as a rare disease advocate during the development of the Sunshine Genetics Act, spoke with Rep. Anderson about the personal story that led him into rare disease advocacy, the path from legislation to the creation of Sunshine Genetics and the Florida Institute for Pediatric Rare Diseases, and Florida’s growing investment in pediatric precision medicine. Their conversation explored the potential of genomic newborn screening to shorten the diagnostic journey for families, the importance of connecting families and pediatricians with genetic counselors and rare disease expertise, and how earlier identification of genetic conditions can help families access appropriate care and make more informed decisions about their child’s health.

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