HB 7079

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49	repealed on October 2, 2016 2011, unless reviewed and saved from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

CODING: Words stricken are deletions; words underlined are additions.