Florida Senate - 2017                                    SB 1124
       By Senator Book
       32-00862-17                                           20171124__
    1                        A bill to be entitled                      
    2         An act relating to newborn screenings; amending s.
    3         383.14, F.S.; requiring the Department of Health, upon
    4         the advice of the Genetics and Newborn Screening
    5         Advisory Council, to expand within a specified period
    6         the statewide screening of newborns to include any
    7         condition on the federal Recommended Uniform Screening
    8         Panel; requiring the council to determine whether a
    9         condition should be included in the state’s screening
   10         program within a specified period after its addition
   11         to the federal panel; providing an effective date.
   13  Be It Enacted by the Legislature of the State of Florida:
   15         Section 1. Subsection (2) and paragraph (a) of subsection
   16  (5) of section 383.14, Florida Statutes, are amended to read:
   17         383.14 Screening for metabolic disorders, other hereditary
   18  and congenital disorders, and environmental risk factors.—
   19         (2) RULES.—
   20         (a) After consultation with the Genetics and Newborn
   21  Screening Advisory Council, the department shall adopt and
   22  enforce rules requiring that every newborn in this state shall:
   23         1. Before, prior to becoming 1 week of age, be subjected to
   24  a test for phenylketonuria;
   25         2.At the appropriate age, be tested for any condition
   26  included on the federal Recommended Uniform Screening Panel
   27  which the council advises the department should be included
   28  under the state’s screening program. The department shall expand
   29  statewide screening of newborns to include screening for such
   30  conditions within 1 year after the council renders such advice;
   31  and
   32         3.and, At the appropriate age, be tested for such other
   33  metabolic diseases and hereditary or congenital disorders as the
   34  department may deem necessary from time to time.
   35         (b) After consultation with the Office of Early Learning,
   36  the department shall also adopt and enforce rules requiring
   37  every newborn in this state to be screened for environmental
   38  risk factors that place children and their families at risk for
   39  increased morbidity, mortality, and other negative outcomes.
   40         (c) The department shall adopt such additional rules as are
   41  found necessary for the administration of this section and s.
   42  383.145, including rules providing definitions of terms, rules
   43  relating to the methods used and time or times for testing as
   44  accepted medical practice indicates, rules relating to charging
   45  and collecting fees for the administration of the newborn
   46  screening program authorized by this section, rules for
   47  processing requests and releasing test and screening results,
   48  and rules requiring mandatory reporting of the results of tests
   49  and screenings for these conditions to the department.
   50         (5) ADVISORY COUNCIL.—There is established a Genetics and
   51  Newborn Screening Advisory Council made up of 15 members
   52  appointed by the State Surgeon General. The council shall be
   53  composed of two consumer members, three practicing
   54  pediatricians, at least one of whom must be a pediatric
   55  hematologist, one representative from each of the four medical
   56  schools in the state, the State Surgeon General or his or her
   57  designee, one representative from the Department of Health
   58  representing Children’s Medical Services, one representative
   59  from the Florida Hospital Association, one individual with
   60  experience in newborn screening programs, one individual
   61  representing audiologists, and one representative from the
   62  Agency for Persons with Disabilities. All appointments shall be
   63  for a term of 4 years. The chairperson of the council shall be
   64  elected from the membership of the council and shall serve for a
   65  period of 2 years. The council shall meet at least semiannually
   66  or upon the call of the chairperson. The council may establish
   67  ad hoc or temporary technical advisory groups to assist the
   68  council with specific topics which come before the council.
   69  Council members shall serve without pay. Pursuant to the
   70  provisions of s. 112.061, the council members are entitled to be
   71  reimbursed for per diem and travel expenses. It is the purpose
   72  of the council to advise the department about:
   73         (a) Conditions for which testing should be included under
   74  the screening program and the genetics program. Within 1 year
   75  after a condition is added to the federal Recommended Uniform
   76  Screening Panel, the council shall consider whether the
   77  condition should be included under the state’s screening
   78  program.
   79         Section 2. This act shall take effect July 1, 2017.