2026 News & Events
PROTECTING GENETIC INFORMATION IN INSURANCE: FLORIDA LEADS THE NATION
A new commentary in Science highlights an important issue in genomic medicine: protecting individuals from genetic discrimination in insurance. While the federal Genetic Information Nondiscrimination Act (GINA)protects individuals from genetic discrimination in health insurance, significant gaps remain at the national level. As a result, states have been left to decide whether and how to strengthen protections through their own policies.
Key Insights:
Florida stands out as a national leader. Florida law prohibits life, long-term care, and disability insurers from requesting or using genetic test results when determining coverage or premiums, providing stronger protections than many other states.
These protections are critically important as genomic medicine advances, given strong privacy and non-discrimination protections help ensure that families can participate in genomic testing and research without fear that their genetic information could be used against them.
At the Florida Institute for Pediatric Rare Diseases (IPRD), we are building a genome-first approach to diagnosing and treating rare diseases. Later this year, in collaboration with Florida’s academic partners, IPRD is poised to launch the Sunshine Genetics newborn genome sequencing pilot program, which will offer clinical genome sequencing to newborns to help identify serious genetic conditions earlier in life.
Why it Matters:
For Florida families and children living with rare diseases, this matters deeply:
- Earlier diagnosis can shorten the diagnostic odyssey
- Precision treatments can begin sooner
- Families can access life-saving care and research opportunities with confidence
Florida’s leadership in both genomic medicine and genetic privacy protections positions the state as a national model for responsible implementation of precision medicine.
At IPRD, we are proud to be part of that effort.