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HB 1547

Pub. Rec./Parkinson's Disease Research Program Registry

2025 Regular Session Introduced by Demi Busatta

Florida bill creates public disease registry for Parkinson's patients to enable research recruitment but risks privacy violations by making sensitive medical data publicly accessible.

Died in Health Professions & Programs Subcommittee, companion bill(s) passed, see CS/CS/HB 1545 (Ch. 2025-188)
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Bill Summary · HB 1547

Legislative bill overview

HB 1547 would establish a public registry for individuals with Parkinson's disease in Florida, creating a centralized database to track patients and facilitate research participation. The bill designates this registry as a public record, meaning the information would be accessible under Florida's public records laws.

Why is this important

A Parkinson's disease registry could accelerate medical research by helping scientists identify and recruit study participants, potentially leading to faster development of treatments. However, the public records designation raises significant privacy concerns for a sensitive health condition registry, as individuals with Parkinson's disease could be identified by anyone accessing public records.

Potential points of contention

  • Privacy vs. Research Access: Making the registry a public record means anyone—not just researchers—could access names and medical information of people with Parkinson's, creating potential stigma, discrimination, or unwanted contact
  • Opt-in vs. Mandatory Participation: Unclear whether participation would be voluntary or automatic for patients diagnosed in Florida, affecting enrollment scope
  • Data Security Standards: The bill may not adequately specify protections against misuse of sensitive health information or breaches, despite public accessibility requirements

Compiled from official sources — confirm details with the bill’s official record.

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