Pub. Rec./Parkinson's Disease Research Program Registry
By establishing this exemption, the bill seeks to ensure that personal healthcare information remains secure and protected. The rationale behind this legislation is that publicly available data could compromise personal privacy and ultimately hinder the effective operation of the Parkinson's Disease Research Program. The ability to keep such information confidential is viewed as essential in fostering a trustworthy environment for patients, potentially encouraging more individuals to participate in the registry without fear of identification or solicitude.
House Bill 1547 amends Florida Statutes to create a public records exemption for information held in the Parkinson's Disease Research Program Registry. This bill aims to protect the privacy of individuals enrolled in the registry by making their identifying information confidential and exempt from public disclosure. This move is intended to prevent potential misuse of the information, which could lead to harassment or invasion of privacy for individuals identified within the registry.
The bill also states that this exemption is subject to the Open Government Sunset Review Act, with a repeal date set for October 2, 2030, unless renewed by the Legislature. This provision allows for future review of the bill's impacts and the necessity of such an exemption. While the bill has the objective of protecting patient privacy, it may still invite debate over the balance between public access to health data and individual privacy rights, highlighting ongoing discussions about transparency in medical and research programs.