The Florida Institute for Pediatric Rare Diseases; the Sunshine Genetics Pilot Program; the Sunshine Genetics Consortium.

(1) The Florida Institute for Pediatric Rare Diseases is established within the Florida State University College of Medicine as a statewide resource for pediatric rare disease research and clinical care. The purpose of the institute is to improve the quality of life and health outcomes for children and families affected by rare diseases by advancing knowledge, diagnosis, and treatment of pediatric rare diseases through research, clinical care, education, and advocacy.

(2) The goals of the institute are to:

(a) Conduct research to better understand the causes, mechanisms, and potential treatments for pediatric rare diseases, including leveraging emerging research methods.

(b) Develop advanced diagnostic and genetic screening tools and techniques to enable health care providers to identify rare diseases in newborns and children more rapidly, accurately, and economically.

(c) Provide comprehensive multidisciplinary clinical services and care for children with rare diseases. Such care may include, but is not limited to, patient, family, and caregiver support and resources to help navigate the challenges associated with these conditions, support groups, and patient advocacy.

(d) Educate and train health care professionals, including, but not limited to, genetic counselors, pediatricians, scientists, and other specialists in the field of pediatric rare diseases.

(e) Establish collaborations with other research institutions, medical centers, patient and family advocacy organizations, and government agencies whenever deemed appropriate by the institute director to share expertise, raise awareness, and promote a collective effort to tackle pediatric rare diseases.

(3)(a) The institute shall establish and administer the Sunshine Genetics Pilot Program to be administered for a period of 5 years. The pilot program shall provide newborn genetic screening, including, but not limited to, whole genome sequencing. Genetic screening shall be performed by the institute and institutional members of the oversight board upon approval of the oversight board.

(b) The institute may establish partnerships with Florida universities and colleges and health care service providers to promote and assist in the implementation of the pilot program.

(c) The pilot program shall be an opt-in program, and a parent of a newborn must provide consent to participate in the pilot program.

(d) The institute and institutional members of the oversight board shall release clinical findings of a newborn’s screening to the newborn’s health care practitioner and the newborn’s parent. As used in this paragraph, the term “health care practitioner” means a physician or physician assistant licensed under chapter 458; an osteopathic physician or physician assistant licensed under chapter 459; an advanced practice registered nurse, registered nurse, or licensed practical nurse licensed under part I of chapter 464; a midwife licensed under chapter 467; a speech-language pathologist or audiologist licensed under part I of chapter 468; a dietitian or nutritionist licensed under part X of chapter 468; or a genetic counselor licensed under part III of chapter 483.