Florida Senate - 2011         (PROPOSED COMMITTEE BILL) SPB 7000
       
       
       
       FOR CONSIDERATION By the Committee on Health Regulation
       
       
       
       
       588-00123D-11                                         20117000__
    1                        A bill to be entitled                      
    2         An act relating to a review under the Open Government
    3         Sunset Review Act; amending s. 381.8531, F.S.;
    4         providing that personal identifying information
    5         pertaining to a donor to the central repository for
    6         brain tumor biopsies or the brain tumor registry of
    7         the Florida Center for Brain Tumor Research is
    8         confidential and exempt from public-records
    9         requirements; providing an exception under certain
   10         conditions for information disclosed to a person
   11         engaged in bona fide research; providing for future
   12         legislative review and repeal of the exemption under
   13         the Open Government Sunset Review Act; providing a
   14         finding of public necessity; providing an effective
   15         date.
   16  
   17  Be It Enacted by the Legislature of the State of Florida:
   18  
   19         Section 1. Section 381.8531, Florida Statutes, is amended
   20  to read:
   21         381.8531 Florida Center for Brain Tumor Research; public
   22  records exemption.—
   23         (1) The following information held by the Florida Center
   24  for Brain Tumor Research before, on, or after July 1, 2011, is
   25  confidential and exempt from s. 119.07(1) and s. 24, Art. I of
   26  the State Constitution:
   27         (a) Any personal identifying information pertaining to a
   28  donor to the central repository for brain tumor biopsies or the
   29  brain tumor registry. An individual’s medical record.
   30         (b) Any information received from an individual from
   31  another state or nation or the Federal Government which that is
   32  otherwise confidential or exempt pursuant to the laws of that
   33  state or nation or pursuant to federal law.
   34         (2) Such information may be disclosed to a person engaged
   35  in bona fide research if that person agrees to:
   36         (a) Submit to the Florida Center for Brain Tumor Research a
   37  research plan that has been approved by an institutional review
   38  board and that specifies the exact nature of the information
   39  requested, the intended use of the information, and the reason
   40  that the research could not practicably be conducted without the
   41  information;
   42         (b) Sign a confidentiality agreement with the Florida
   43  Center for Brain Tumor Research;
   44         (c) Maintain the confidentiality of the personal
   45  identifying information or otherwise confidential or exempt
   46  information; and
   47         (d) To the extent permitted by law and after the research
   48  has concluded, destroy any confidential records or information
   49  obtained.
   50         (3)(2) This section is subject to the Open Government
   51  Sunset Review Act in accordance with s. 119.15 and shall stand
   52  repealed on October 2, 2016 2011, unless reviewed and saved from
   53  repeal through reenactment by the Legislature.
   54         Section 2. The Legislature finds that it is a public
   55  necessity that personal identifying information pertaining to a
   56  donor to the central repository for brain tumor biopsies or the
   57  brain tumor registry of the Florida Center for Brain Tumor
   58  Research pursuant to s. 381.853, Florida Statutes, be made
   59  confidential and exempt from public-records requirements. Brain
   60  tumors are a leading cause of death, and there is a significant
   61  need to discover cures and develop treatment modalities for
   62  brain tumors, which can be facilitated by a registry and
   63  repository of specimens from persons diagnosed with brain
   64  tumors. The disclosure of such information could hinder the
   65  availability of specimens for research. Matters of personal
   66  health are traditionally private and confidential concerns
   67  between the patient and the health care provider. The private
   68  and confidential nature of personal health matters pervades both
   69  the public and private health care sectors. For these reasons,
   70  the donor’s expectation of and right to privacy in all matters
   71  regarding his or her personal health necessitates this
   72  exemption. The Legislature further finds that it is a public
   73  necessity to protect a patient’s medical diagnosis and
   74  information because the release of such information could be
   75  defamatory to the patient or could cause unwarranted damage to
   76  the name or reputation of the patient.
   77         Section 3. This act shall take effect July 1, 2011.