Illinois Compiled Statutes
Chapter 410 - PUBLIC HEALTH
410 ILCS 240/ - Newborn Metabolic Screening Act.

(410 ILCS 240/0.01) (from Ch. 111 1/2, par. 4902.9)
Sec. 0.01. Short title. This Act may be cited as the
Newborn Metabolic Screening
Act.

(Source: P.A. 95-695, eff. 11-5-07.)
 
(410 ILCS 240/1) (from Ch. 111 1/2, par. 4903)
Sec. 1.
The Illinois Department of Public Health shall promulgate and
enforce rules and regulations requiring that every newborn be subjected
to tests for genetic, metabolic, and congenital anomalies as the
Department may deem necessary. The Department is
empowered to promulgate such additional rules and regulations as are
found necessary for the administration of this Act, including mandatory
reporting of the results of all tests for these conditions to the
Illinois Department of Public Health.

(Source: P.A. 98-440, eff. 8-16-13.)
 
(410 ILCS 240/1.5)
Sec. 1.5. Definitions. In this Act:
"Accredited laboratory" means any laboratory that holds a valid
certificate issued under the Clinical Laboratory Improvement
Amendments of 1988, 102 Stat. 2903, 42 U.S.C. 263a, as amended,
and that reports its screening results by using normal pediatric reference
ranges.
"Department" means the Department of Public Health.


(Source: P.A. 98-440, eff. 8-16-13.)
 
(410 ILCS 240/1.10)
Sec. 1.10. Critical congenital heart disease.
(a) The General Assembly finds as follows:
(b) The Department shall require that screening tests for critical congenital heart defects be performed at birthing hospitals and birth centers in accordance with a testing protocol adopted by the Department, by rule, in line with current standards of care, such as pulse oximetry screening, and may authorize screening tests for additional congenital anomalies to be performed at birthing hospitals and birth centers in accordance with a testing protocol adopted by the Department, by rule.
(c) The Department may authorize health care facilities to report screening test results and follow-up information.

(Source: P.A. 98-440, eff. 8-16-13.)
 
(410 ILCS 240/2) (from Ch. 111 1/2, par. 4904)
Sec. 2. General provisions. The Department of Public Health shall administer the
provisions of this Act and shall:
(a) Institute and carry on an intensive educational program among
physicians, hospitals, public health nurses and the public concerning disorders included in newborn screening. This
educational program shall include information about the nature of the
diseases and examinations for the detection of the diseases in early
infancy in order that measures may be taken to prevent the disabilities resulting from the diseases.
(a-5) Require that all newborns be screened
for the presence of certain genetic, metabolic, and congenital anomalies as determined by the Department, by rule.
(a-5.1) Require that all blood and biological specimens collected pursuant to this Act or the rules adopted under this Act be submitted for testing to the nearest Department laboratory designated to perform such tests. The following provisions shall apply concerning testing:
(a-5.2) Maintain a registry of cases, including information of importance for the purpose of follow-up services to assess long-term outcomes.
(a-5.3) Supply the necessary metabolic treatment formulas where practicable for diagnosed cases of amino acid metabolism disorders, including phenylketonuria, organic acid disorders, and fatty acid oxidation disorders for as long as medically indicated, when the product is not available through other State agencies.
(a-5.4) Arrange for or provide public health nursing, nutrition, and social services and clinical consultation as indicated.
(a-5.5) Utilize the Genetic and Metabolic Diseases Advisory Committee established under the Genetic and Metabolic Diseases Advisory Committee Act to provide guidance and recommendations to the Department's newborn screening program. The Genetic and Metabolic Diseases Advisory Committee shall review the feasibility and advisability of including additional metabolic, genetic, and congenital disorders in the newborn screening panel, according to a review protocol applied to each suggested addition to the screening panel. The Department shall consider the recommendations of the Genetic and Metabolic Diseases Advisory Committee in determining whether to include an additional disorder in the screening panel prior to proposing an administrative rule concerning inclusion of an additional disorder in the newborn screening panel. Notwithstanding any other provision of law, no new screening may begin prior to the occurrence of all the following:
(a-6) (Blank).
(a-7) (Blank).
(a-8) (Blank).
(b) (Blank).
(c) (Blank).
(d) (Blank).
(e) (Blank).

(Source: P.A. 98-440, eff. 8-16-13; 98-756, eff. 7-16-14; 99-403, eff. 8-19-15.)
 
(410 ILCS 240/3) (from Ch. 111 1/2, par. 4905)
Sec. 3.

The provisions of this Act shall not apply when parent or
guardian of the child objects thereto on the grounds that such test
conflicts with his religious tenets and practices. A written statement
of such objection shall be presented to the physician or other person
whose duty it is to administer and report such tests under the
provisions of this Act.

(Source: Laws 1965, p. 284.)
 
(410 ILCS 240/3.1)
Sec. 3.1. Lysosomal storage disorders. In accordance with the timetable specified in this Section, the Department shall provide all newborns with screening tests for the presence of certain lysosomal storage disorders known as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick. The testing shall begin within 6 months following the occurrence of all of the following:
It was the goal of Public Act 97-532 that the screening for the specified lysosomal storage disorders begins within 2 years after August 23, 2011 (the effective date of Public Act 97-532). The Department is authorized to implement an additional fee for the screening prior to beginning the testing in order to accumulate the resources for start-up and other costs associated with implementation of the screening and thereafter to support the costs associated with screening and follow-up programs for the specified lysosomal storage disorders.

(Source: P.A. 98-440, eff. 8-16-13.)
 
(410 ILCS 240/3.2)
Sec. 3.2. Severe combined immunodeficiency disease. In accordance with the timetable specified in this Section, the Department shall provide all newborns with screening tests for the presence of severe combined immunodeficiency
disease (SCID). The testing shall begin within 12 months following the occurrence of all of the following:
It was the goal of Public Act 97-532 that the screening for severe combined immunodeficiency disease begins within 2 years after August 23, 2011 (the effective date of Public Act 97-532). The Department is authorized to implement an additional fee for the screening prior to beginning the testing in order to accumulate the resources for start-up and other costs associated with implementation of the screening and thereafter to support the costs associated with screening and follow-up programs for severe combined immunodeficiency disease.

(Source: P.A. 98-440, eff. 8-16-13.)
 
(410 ILCS 240/3.3)
Sec. 3.3. Mucopolysacchardosis disorders. In accordance with the timetable specified in this Section, the Department shall provide all newborns with screening tests for the presence of certain lysosomal storage disorders
known as mucopolysaccharidosis I (Hurlers) and mucopolysaccharidosis II (Hunters). The testing shall begin within 12 months following the occurrence of all of the following:
It was the goal of Public Act 97-532 that the screening for the specified lysosomal storage disorders begins within 3 years after August 23, 2011 (the effective date of Public Act 97-532). The Department is authorized to implement an additional fee for the screening prior to beginning the testing in order to accumulate the resources for start-up and other costs associated with implementation of the screening and thereafter to support the costs associated with screening and follow-up programs for the specified lysosomal storage
disorders.

(Source: P.A. 98-440, eff. 8-16-13.)
 
(410 ILCS 240/3.4)
Sec. 3.4. Adrenoleukodystrophy. In accordance with the timetable specified in this Section, the Department shall provide all newborns with screening tests for the presence of adrenoleukodystrophy (ALD). The testing shall begin within 18 months following the occurrence of all of the following:
The Department is authorized to implement an additional fee for the screening no sooner than 6 months prior to beginning the testing in order to accumulate the resources for start-up and other costs associated with implementation of the screening and thereafter to support the costs associated with screening and follow-up programs for adrenoleukodystrophy.

(Source: P.A. 99-403, eff. 8-19-15.)
 
(410 ILCS 240/3.35)
Sec. 3.35. Spinal muscular atrophy. In accordance with the timetable specified in this Section, the Department shall provide all newborns with a screening test for spinal muscular atrophy using a method that determines the presence or absence of the intact or normal SMN1 gene, beginning on the earlier of the following:
The Department is authorized to implement an additional fee for the screening upon the effective date of this amendatory Act of the 100th General Assembly in order to accumulate the resources for start-up and other costs associated with the implementation of the screening and thereafter to support the costs associated with screening. If the Department has not implemented statewide screening for spinal muscular atrophy under this Section within 36 months after the effective date of this amendatory Act of the 100th General Assembly, then the Department shall cease collecting any additional fees related to the screening. The Department may adopt emergency rules in accordance with Section 5-45 of the Illinois Administrative Procedure Act to implement this Section.

(Source: P.A. 100-864, eff. 8-14-18.)

Structure Illinois Compiled Statutes