FL
Florida House Bill H0907

Florida 2025 Regular Session

Florida House Bill H0907 Compare Versions

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1010 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
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1414 A bill to be entitled 1
1515 An act relating to the Florida Institute for Pediatric 2
1616 Rare Diseases; creating s. 1004.4211, F.S.; 3
1717 establishing the Florida Institute for Pediatric Rare 4
1818 Diseases within the Florida State University College 5
1919 of Medicine; providing the goals of the institute; 6
2020 requiring the institute to establish and administer 7
2121 the Sunshine Genetics Pilot Program for a specified 8
2222 period; providing the purpose of the pilot program; 9
2323 providing institute responsibilities and duties 10
2424 relating to the pilot program; providing requirements 11
2525 for participation in the pilot program and data 12
2626 collection and release in the pilot program; defining 13
2727 the term "health care practitioner"; providing 14
2828 reporting requirements for the pilot program; 15
2929 establishing the Sunshine Genetics Consortium for 16
3030 specified purposes; requiring the consortium to be 17
3131 administered at the institute by an oversight board; 18
3232 providing for the membership and terms of the board; 19
3333 providing meeting and reporting requirements for the 20
34-consortium; providing that specified provisions will 21
35-be implemented subject to available funding in the 22
36-General Appropriations Act; providing an effective 23
37-date. 24
34+consortium; providing appropriations; providing an 21
35+effective date. 22
36+ 23
37+Be It Enacted by the Legislature of the State of Florida: 24
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4747 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
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51-Be It Enacted by the Legislature of the State of Florida: 26
52- 27
53- Section 1. Section 1004.4211, Florida Statutes, is created 28
54-to read: 29
55- 1004.4211 The Florida Institute for Pediatric Rare 30
56-Diseases; the Sunshine Genetics Pilot Program; the Sunshine 31
57-Genetics Consortium. — 32
58- (1) The Florida Institute for Pediatr ic Rare Diseases is 33
59-established within the Florida State University College of 34
60-Medicine as a statewide resource for pediatric rare disease 35
61-research and clinical care. The purpose of the institute is to 36
62-improve the quality of life and health outcomes for ch ildren and 37
63-families affected by rare diseases by advancing knowledge, 38
64-diagnosis, and treatment of pediatric rare diseases through 39
65-research, clinical care, education, and advocacy. 40
66- (2) The goals of the institute are to: 41
67- (a) Conduct research to better un derstand the causes, 42
68-mechanisms, and potential treatments for pediatric rare 43
69-diseases, including leveraging emerging research methods. 44
70- (b) Develop advanced diagnostic and genetic screening 45
71-tools and techniques to enable health care providers to identify 46
72-rare diseases in newborns and children more rapidly, accurately, 47
73-and economically. 48
74- (c) Provide comprehensive multidisciplinary clinical 49
75-services and care for children with rare diseases. Such care may 50
51+ Section 1. Section 1004.4211, Florida Statutes, is created 26
52+to read: 27
53+ 1004.4211 The Florida Institute for Pediatric Rare 28
54+Diseases; the Sunshine Genetics Pilot Program; the Sunshine 29
55+Genetics Consortium. — 30
56+ (1) The Florida Institute for Pediatric Rare Diseases is 31
57+established within the Florida State University College of 32
58+Medicine as a statewide resource for pediatric rare disease 33
59+research and clinical care. The purpose of the institute is to 34
60+improve the quality of life and health outcomes for children and 35
61+families affected by rare diseases by advancing knowledge, 36
62+diagnosis, and treatment of pediatric rare diseases through 37
63+research, clinical care, education, and advocacy. 38
64+ (2) The goals of the institute are to: 39
65+ (a) Conduct research to better understand the causes, 40
66+mechanisms, and potential treatments for pediatric rare 41
67+diseases, including leveraging emerging research methods. 42
68+ (b) Develop advanced diagnostic and genetic screening 43
69+tools and techniques to enable health care providers to identify 44
70+rare diseases in newborns and children more rapidly, accurately, 45
71+and economically. 46
72+ (c) Provide comprehensive multidisciplinary clinical 47
73+services and care for children with rare diseases. Such care may 48
74+include, but is not limited to, patient, family, and caregiver 49
75+support and resources to help navigate the challenges associated 50
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8484 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
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88-include, but is not limited to, patient, family, and caregiver 51
89-support and resources to help navigate the challenges associated 52
90-with these conditions, support groups, and patient advocacy. 53
91- (d) Educate and train health care professionals, 54
92-including, but not limited to, genetic counselors, 55
93-pediatricians, scientists, and other specialists in the field of 56
94-pediatric rare diseases. 57
95- (e) Establish collaborations with other research 58
96-institutions, medical centers, patient and family advocacy 59
97-organizations, and government agencies whenever deemed 60
98-appropriate by the institute director to share expertise, raise 61
99-awareness, and promote a collective effort to tackle pediatric 62
100-rare diseases. 63
101- (3)(a) The institute shall establish and administer the 64
102-Sunshine Genetics Pilot Program to be administered for a period 65
103-of 5 years. The pilot program shall provide newborn genetic 66
104-screening, including, but not limited to, whole genome 67
105-sequencing. Genetic screening shall be performed by the 68
106-institute and institutional members of the oversight board upon 69
107-approval of the oversight board . 70
108- (b) The institute may establish partnerships with Florida 71
109-universities and colleges and health care service providers to 72
110-promote and assist in the implementation of the pilot program. 73
111- (c) The pilot program shall be an opt -in program and a 74
112-parent of a newborn must provide consent to participate in the 75
88+with these conditions, support groups, and patient advocacy. 51
89+ (d) Educate and train health care professionals, 52
90+including, but not limited to, genetic counselors, 53
91+pediatricians, scientists, and other specialists in the field of 54
92+pediatric rare diseases. 55
93+ (e) Establish colla borations with other research 56
94+institutions, medical centers, patient and family advocacy 57
95+organizations, and government agencies whenever deemed 58
96+appropriate by the institute director to share expertise, raise 59
97+awareness, and promote a collective effort to ta ckle pediatric 60
98+rare diseases. 61
99+ (3)(a) The institute shall establish and administer the 62
100+Sunshine Genetics Pilot Program to be administered for a period 63
101+of 5 years. The pilot program shall provide newborn genetic 64
102+screening, including, but not limited to, wh ole genome 65
103+sequencing. Genetic screening shall be performed by the 66
104+institute and institutional members of the oversight board upon 67
105+approval of the oversight board. 68
106+ (b) The institute may establish partnerships with Florida 69
107+universities and colleges and he alth care service providers to 70
108+promote and assist in the implementation of the pilot program. 71
109+ (c) The pilot program shall be an opt -in program and a 72
110+parent of a newborn must provide consent to participate in the 73
111+pilot program. 74
112+ (d) The institute and institutional members of the 75
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121121 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
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125-pilot program. 76
126- (d) The institute and institutional members of the 77
127-oversight board shall release clinical findings of a newborn's 78
128-screening to the newborn's health care practitioner and the 79
129-newborn's parent. As used in this paragraph, the term "health 80
130-care practitioner" means a physician or physician assistant 81
131-licensed under chapter 458; an osteopathic physician or 82
132-physician assistant licensed under chapter 459; an advanced 83
133-practice registered nurse, r egistered nurse, or licensed 84
134-practical nurse licensed under part I of chapter 464; a midwife 85
135-licensed under chapter 467; a speech -language pathologist or 86
136-audiologist licensed under part I of chapter 468; a dietitian or 87
137-nutritionist licensed under part X of chapter 468; or a genetic 88
138-counselor licensed under part III of chapter 483. 89
139- (e) The institute shall: 90
140- 1. Maintain a secure database to collect and store all 91
141-pilot program data, including, but not limited to, newborn 92
142-genomics sequence data and deidentif ied newborn data. 93
143- 2. Provide deidentified newborn data to members of the 94
144-consortium pursuant to a data sharing agreement to support 95
145-ongoing and future research. 96
146- (f) By December 1, 2030, the institute shall provide a 97
147-report on the Sunshine Genetics Pilo t Program to the Governor, 98
148-the President of the Senate, and the Speaker of the House of 99
149-Representatives. The report must include, at a minimum: 100
125+oversight board shall release clinical findings of a newborn's 76
126+screening to the newborn's health care practitioner and the 77
127+newborn's parent. As used in this paragraph, the term "health 78
128+care practitioner" means a physician or physician assistant 79
129+licensed under chapter 458; an osteopathic physician or 80
130+physician assistant licensed under chapter 459; an advanced 81
131+practice registered nurse, registered nurse, or licensed 82
132+practical nurse licensed under part I of c hapter 464; a midwife 83
133+licensed under chapter 467; a speech -language pathologist or 84
134+audiologist licensed under part I of chapter 468; a dietitian or 85
135+nutritionist licensed under part X of chapter 468; or a genetic 86
136+counselor licensed under part III of chapter 483. 87
137+ (e) The institute shall: 88
138+ 1. Maintain a secure database to collect and store all 89
139+pilot program data, including, but not limited to, newborn 90
140+genomics sequence data and deidentified newborn data. 91
141+ 2. Provide deidentified newborn data to members of the 92
142+consortium pursuant to a data sharing agreement to support 93
143+ongoing and future research. 94
144+ (f) By December 1, 2030, the institute shall provide a 95
145+report on the Sunshine Genetics Pilot Program to the Governor, 96
146+the President of the Senate, and the Speaker of the House of 97
147+Representatives. The report must include, at a minimum: 98
148+ 1. Study population and enrollment metrics. 99
149+ 2. Whole genome sequencing metrics. 100
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162- 1. Study population and enrollment metrics. 101
163- 2. Whole genome sequencing metrics. 102
164- 3. Clinical and public hea lth impact. 103
165- 4. Cost effectiveness and economic benefits. 104
166- (4)(a) The Sunshine Genetics Consortium is established to 105
167-create a network of clinical and academic research 106
168-professionals, geneticists, and physicians from state 107
169-universities and the state's chi ldren's hospitals to collaborate 108
170-with leaders in the genetic industry and build and support a 109
171-culture of collaborative research and the development of cutting 110
172-edge genetic and precision medicine in the state. The consortium 111
173-shall: 112
174- 1. Integrate state-of-the-art genomic sequencing 113
175-technologies. 114
176- 2. Advance research and the development of cutting edge 115
177-genetic and precision medicine. 116
178- 3. Leverage advancements in artificial intelligence 117
179-utilization in genomics. 118
180- 4. Develop educational opportunities for clin icians on 119
181-genomic tools. 120
182- 5. Support the growth and education of geneticists to meet 121
183-demand. 122
184- 6. Solicit and leverage funds from nonprofits, private 123
185-industry, and others for the purpose of expanding the Sunshine 124
186-Genetics Pilot Program and to support gene tic screenings by 125
162+ 3. Clinical and public health impact. 101
163+ 4. Cost effectiveness and economic benefits. 102
164+ (4)(a) The Sunshine Genetics Consortium is established to 103
165+create a network of clinical and academic research 104
166+professionals, geneticists, and physicians from state 105
167+universities and the state's children's hospitals to collaborate 106
168+with leaders in the genetic industry a nd build and support a 107
169+culture of collaborative research and the development of cutting 108
170+edge genetic and precision medicine in the state. The consortium 109
171+shall: 110
172+ 1. Integrate state-of-the-art genomic sequencing 111
173+technologies. 112
174+ 2. Advance research and the d evelopment of cutting edge 113
175+genetic and precision medicine. 114
176+ 3. Leverage advancements in artificial intelligence 115
177+utilization in genomics. 116
178+ 4. Develop educational opportunities for clinicians on 117
179+genomic tools. 118
180+ 5. Support the growth and education of genet icists to meet 119
181+demand. 120
182+ 6. Solicit and leverage funds from nonprofits, private 121
183+industry, and others for the purpose of expanding the Sunshine 122
184+Genetics Pilot Program and to support genetic screenings by 123
185+institutional members of the oversight board. 124
186+ 7. Promote patient care that supports families with 125
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195195 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
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199-institutional members of the oversight board. 126
200- 7. Promote patient care that supports families with 127
201-children diagnosed with genetic disorders. 128
202- 8. Report on the use of deidentified newborn data by 129
203-members of the consortium. 130
204- (b)1. The consortium shall be administered at the 131
205-institute by an oversight board. The board shall convene at 132
206-least once every 6 months. 133
207- 2. The oversight board for the consortium shall consist of 134
208-the director of the institute who shall serve as chair and the 135
209-following voting members who shall serve 2 -year terms: 136
210- a. One member nominated by the dean of the University of 137
211-Florida's College of Medicine and approved by the university's 138
212-president. 139
213- b. One member nominated by the dean of the University of 140
214-South Florida's College of Medicine and approved by the 141
215-university's president. 142
216- c. One member nominated by the dean of the University of 143
217-Miami's School of Medicine and approved by the university's 144
218-president. 145
219- d. One member nominated by the dean of Florida 146
220-International University's College of Medicine and approved by 147
221-the university's president. 148
222- e. One member nominated by Nicklaus Children's Hospital 149
223-and approved by the hospital's president and chief executive 150
199+children diagnosed with genetic disorders. 126
200+ 8. Report on the use of deidentified newborn data by 127
201+members of the consortium. 128
202+ (b)1. The consortium shall be administered at the 129
203+institute by an oversight board. The board shall convene at 130
204+least once every 6 months. 131
205+ 2. The oversight board for the consortium shall consist of 132
206+the director of the institute who shall serve as chair and the 133
207+following voting members who shall serve 2 -year terms: 134
208+ a. One member nomina ted by the dean of the University of 135
209+Florida's College of Medicine and approved by the university's 136
210+president. 137
211+ b. One member nominated by the dean of the University of 138
212+South Florida's College of Medicine and approved by the 139
213+university's president. 140
214+ c. One member nominated by the dean of the University of 141
215+Miami's School of Medicine and approved by the university's 142
216+president. 143
217+ d. One member appointed by the Governor. 144
218+ e. One member appointed by the President of the Senate. 145
219+ f. One member appointed by th e Speaker of the House of 146
220+Representatives. 147
221+ 3. The board shall be responsible for the promotion and 148
222+oversight of the consortium, including, but not limited to, the 149
223+nomination and appointment of members of the consortium. 150
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232232 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
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236-officer. 151
237- f. One member appointed by the Governor. 152
238- g. One member appointed by the President of the Senate. 153
239- h. One member appointed by the Speaker of the House of 154
240-Representatives. 155
241- 3. The board shall be responsible for the promotion and 156
242-oversight of the consortium, including, but not limited to, the 157
243-nomination and appointment of members of the consortium. 158
244- (c) Beginning October 15, 2026, and annually thereafter, 159
245-the consortium shall provide a report to the Governor, the 160
246-President of the Senate, and the Speaker of the House of 161
247-Representatives on research projects, research findings, 162
248-community outreach initiatives, and future plans for the 163
249-consortium. 164
250- (5) The provisions of this section shall be implemented to 165
251-the extent of available appropriations contained in the annual 166
252-General Appropriations Ac t for such purpose. 167
253- Section 2. This act shall take effect July 1, 2025. 168
236+ (c) Beginning October 15, 2026, and annually thereafter, 151
237+the consortium shall provide a report to the Governor, the 152
238+President of the Senate, and the Speaker of the House of 153
239+Representatives on research projects, research findings, 154
240+community outreach initia tives, and future plans for the 155
241+consortium. 156
242+ Section 2. For the 2025-2026 fiscal year, the sum of $5 157
243+million in recurring funds is appropriated from the General 158
244+Revenue Fund to the Florida Institute for Pediatric Rare 159
245+Diseases. 160
246+ Section 3. For the 2025-2026 fiscal year, the sum of $20 161
247+million in nonrecurring funds is appropriated from the General 162
248+Revenue Fund to the Florida Institute for Pediatric Rare 163
249+Diseases for the implementation of the Sunshine Genetics Pilot 164
250+Program established in s. 1 004.4211, Florida Statutes. 165
251+ Section 4. This act shall take effect July 1, 2025. 166