Privacy, Policy and Legal Issues > Current Policy Priority

Current Policy Priority

Florida Enacts Sweeping Genetic Protection Law

Genetic Privacy & Protection

July 1, 2020 - Florida just became first state to enact a law that protects genetic information from life, long-term care and disability insurers, which are exempt from the national protections provided by the Genetic Information Nondiscrimination Act (GINA). 

GINA prevents health insurers and employers from using genetic information to discriminate. For group and individual health insurers, as well as federally regulated health plans, GINA prohibits:

  • Gina Logolooking at predictive genetic information or genetic services before enrollment;
  • "requesting or requiring" that individuals or their family members take a genetic test;
  • restricting enrollment or coverage based on genetic information; or
  • changing premiums based on genetic information.

Unfortunately, GINA doesn't apply to life, disability or long-term care coverage so these insurers are permitted to ask about health, family history of disease or genetic information for policy applicants—and to deny coverage or increase rates based on that information.

Without comprehensive federal genetic privacy regulation, some states have adopted laws that restrict third parties—such as insurers or employers—from accessing genetic data without consent. The new Florida law, however, is the most comprehensive in the U.S. and sets the stage for future expansion of genetic protections. 

The Florida law states that insurers cannot require or ask for genetic information or use genetic test results in any manner. A person can volunteer DNA information from a genetic test—such as BRCA or another mutation—to insurers, but they are not required to do so. Even if genetic information is shared, the insurers cannot deny coverage, limit, or cancel insurance coverage, or set different premiums based on genetic information or DNA.

It is important to note that the law does allow life, long-term care and disability insurers to consider the diagnosis of an illness or disease such as cancer that is in a person's medical records. A cancer diagnosis can disqualify you from coverage but insurance companies may still offer you a plan if you've been in remission for 3-5 years (the timeframe varies between insurance companies). 

The law applies to insurance policies starting or renewed on or after January 1, 2021.
 

Take Action Now Advocacy Archive Public Policy Priorities
News Briefs

12/14/2020 - Reached out to Hill leadership requesting that any end-of-year legislative package include a permanent extension of the 7.5% threshold for medical expense deductions. 

12/10/2020 - Joined over 300 national, state and community organizations in a letter to the Biden-Harris Transition Team urging the incoming administration to prioritize healthcare immediately upon taking office and outlining key priorities. 

12/9/2020 - Signed on to a letter asking Congressional leadership to include the Removing Barriers to Colorectal Cancer Screening Act (HR1570/S668) in the year-end legislative package, waiving Medicare coinsurance if polyps are found/removed during a colonoscopy screening.

11/17/2020 - Sent a letter to Texas legislators expressing support for genetic counselor licensure, an important mechanism to help patients and providers identify appropriately trained and qualified genetic counseling professionals.

More