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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S
A bill to be entitled 1
An act relating to the Florida Institute for Pediatric 2
Rare Diseases; creating s. 1004.4211, F.S.; 3
establishing the Florida Institute for Pediatric Rare 4
Diseases within the Florida State University College 5
of Medicine; providing the goals of the institute; 6
requiring the institute to establish and administer 7
the Sunshine Genetics Pilot Program for a specified 8
period; providing the purpose of the pilot program; 9
providing institute responsibilities and duties 10
relating to the pilot program; providing requirements 11
for participation in the pilot program and data 12
collection and release in the pilot program; defining 13
the term "health care practitioner"; providing 14
reporting requirements for the pilot program; 15
establishing the Sunshine Genetics Consortium for 16
specified purposes; requiring the consortium to be 17
administered at the institute by an oversight board; 18
providing for the membership and terms of the board; 19
providing meeting and reporting requirements for the 20
consortium; providing that specified provisions will 21
be implemented subject to available funding in the 22
General Appropriations Act; providing an effective 23
date. 24
25
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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S
Be It Enacted by the Legislature of the State of Florida: 26
27
Section 1. Section 1004.4211, Florida Statutes, is created 28
to read: 29
1004.4211 The Florida Institute for Pediatric Rare 30
Diseases; the Sunshine Genetics Pilot Program; the Sunshine 31
Genetics Consortium. — 32
(1) The Florida Institute for Pediatr ic Rare Diseases is 33
established within the Florida State University College of 34
Medicine as a statewide resource for pediatric rare disease 35
research and clinical care. The purpose of the institute is to 36
improve the quality of life and health outcomes for ch ildren and 37
families affected by rare diseases by advancing knowledge, 38
diagnosis, and treatment of pediatric rare diseases through 39
research, clinical care, education, and advocacy. 40
(2) The goals of the institute are to: 41
(a) Conduct research to better un derstand the causes, 42
mechanisms, and potential treatments for pediatric rare 43
diseases, including leveraging emerging research methods. 44
(b) Develop advanced diagnostic and genetic screening 45
tools and techniques to enable health care providers to identify 46
rare diseases in newborns and children more rapidly, accurately, 47
and economically. 48
(c) Provide comprehensive multidisciplinary clinical 49
services and care for children with rare diseases. Such care may 50
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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S
include, but is not limited to, patient, family, and caregiver 51
support and resources to help navigate the challenges associated 52
with these conditions, support groups, and patient advocacy. 53
(d) Educate and train health care professionals, 54
including, but not limited to, genetic counselors, 55
pediatricians, scientists, and other specialists in the field of 56
pediatric rare diseases. 57
(e) Establish collaborations with other research 58
institutions, medical centers, patient and family advocacy 59
organizations, and government agencies whenever deemed 60
appropriate by the institute director to share expertise, raise 61
awareness, and promote a collective effort to tackle pediatric 62
rare diseases. 63
(3)(a) The institute shall establish and administer the 64
Sunshine Genetics Pilot Program to be administered for a period 65
of 5 years. The pilot program shall provide newborn genetic 66
screening, including, but not limited to, whole genome 67
sequencing. Genetic screening shall be performed by the 68
institute and institutional members of the oversight board upon 69
approval of the oversight board . 70
(b) The institute may establish partnerships with Florida 71
universities and colleges and health care service providers to 72
promote and assist in the implementation of the pilot program. 73
(c) The pilot program shall be an opt -in program and a 74
parent of a newborn must provide consent to participate in the 75
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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S
pilot program. 76
(d) The institute and institutional members of the 77
oversight board shall release clinical findings of a newborn's 78
screening to the newborn's health care practitioner and the 79
newborn's parent. As used in this paragraph, the term "health 80
care practitioner" means a physician or physician assistant 81
licensed under chapter 458; an osteopathic physician or 82
physician assistant licensed under chapter 459; an advanced 83
practice registered nurse, r egistered nurse, or licensed 84
practical nurse licensed under part I of chapter 464; a midwife 85
licensed under chapter 467; a speech -language pathologist or 86
audiologist licensed under part I of chapter 468; a dietitian or 87
nutritionist licensed under part X of chapter 468; or a genetic 88
counselor licensed under part III of chapter 483. 89
(e) The institute shall: 90
1. Maintain a secure database to collect and store all 91
pilot program data, including, but not limited to, newborn 92
genomics sequence data and deidentif ied newborn data. 93
2. Provide deidentified newborn data to members of the 94
consortium pursuant to a data sharing agreement to support 95
ongoing and future research. 96
(f) By December 1, 2030, the institute shall provide a 97
report on the Sunshine Genetics Pilo t Program to the Governor, 98
the President of the Senate, and the Speaker of the House of 99
Representatives. The report must include, at a minimum: 100
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1. Study population and enrollment metrics. 101
2. Whole genome sequencing metrics. 102
3. Clinical and public hea lth impact. 103
4. Cost effectiveness and economic benefits. 104
(4)(a) The Sunshine Genetics Consortium is established to 105
create a network of clinical and academic research 106
professionals, geneticists, and physicians from state 107
universities and the state's chi ldren's hospitals to collaborate 108
with leaders in the genetic industry and build and support a 109
culture of collaborative research and the development of cutting 110
edge genetic and precision medicine in the state. The consortium 111
shall: 112
1. Integrate state-of-the-art genomic sequencing 113
technologies. 114
2. Advance research and the development of cutting edge 115
genetic and precision medicine. 116
3. Leverage advancements in artificial intelligence 117
utilization in genomics. 118
4. Develop educational opportunities for clin icians on 119
genomic tools. 120
5. Support the growth and education of geneticists to meet 121
demand. 122
6. Solicit and leverage funds from nonprofits, private 123
industry, and others for the purpose of expanding the Sunshine 124
Genetics Pilot Program and to support gene tic screenings by 125
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institutional members of the oversight board. 126
7. Promote patient care that supports families with 127
children diagnosed with genetic disorders. 128
8. Report on the use of deidentified newborn data by 129
members of the consortium. 130
(b)1. The consortium shall be administered at the 131
institute by an oversight board. The board shall convene at 132
least once every 6 months. 133
2. The oversight board for the consortium shall consist of 134
the director of the institute who shall serve as chair and the 135
following voting members who shall serve 2 -year terms: 136
a. One member nominated by the dean of the University of 137
Florida's College of Medicine and approved by the university's 138
president. 139
b. One member nominated by the dean of the University of 140
South Florida's College of Medicine and approved by the 141
university's president. 142
c. One member nominated by the dean of the University of 143
Miami's School of Medicine and approved by the university's 144
president. 145
d. One member nominated by the dean of Florida 146
International University's College of Medicine and approved by 147
the university's president. 148
e. One member nominated by Nicklaus Children's Hospital 149
and approved by the hospital's president and chief executive 150
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officer. 151
f. One member appointed by the Governor. 152
g. One member appointed by the President of the Senate. 153
h. One member appointed by the Speaker of the House of 154
Representatives. 155
3. The board shall be responsible for the promotion and 156
oversight of the consortium, including, but not limited to, the 157
nomination and appointment of members of the consortium. 158
(c) Beginning October 15, 2026, and annually thereafter, 159
the consortium shall provide a report to the Governor, the 160
President of the Senate, and the Speaker of the House of 161
Representatives on research projects, research findings, 162
community outreach initiatives, and future plans for the 163
consortium. 164
(5) The provisions of this section shall be implemented to 165
the extent of available appropriations contained in the annual 166
General Appropriations Ac t for such purpose. 167
Section 2. This act shall take effect July 1, 2025. 168