Amends the Genetic and Metabolic Diseases Advisory Committee Act. Changes the name of the Genetic and Metabolic Diseases Advisory Committee to the Universal Newborn Screening Advisory Committee. Adds duties for the Committee, including duties to hold quarterly meetings, review conditions, make recommendations, and prepare reports. Makes conforming changes in the short title of the Act, the Newborn Metabolic Screening Act, and the Rare Disease Commission Act. Effective immediately.
Senate Committee Amendment No. 1: Replaces everything after the enacting clause with the provisions of the introduced bill with the following changes. Provides that, beginning January 1, 2027, the Universal Newborn Screening Advisory Committee shall review all new conditions added to the federal Recommended Uniform Screening Panel within 12 months of the condition being added to the Panel, as long as the condition meets the requirements. Further provides that if the Panel includes conditions not screened by the State on the effective date of the amendatory Act, the Committee shall begin review of the condition no later than one year after the effective date of the Act. Deletes changes to the short title of the Genetic and Metabolic Diseases Advisory Committee Act. In provisions regarding purposes of the Committee, provides that the Committee shall carry out those purposes, as well as other duties, to include conducting reviews of conditions, making formal recommendations, and submitting annual reports to the Governor and the General Assembly. Deletes provisions regarding duties of the Committee. Deletes changes to the Rare Disease Commission Act. Makes technical changes. Deletes the effective date.
House Committee Amendment No. 1: Replaces everything after the enacting clause with the provisions of the engrossed bill with the following changes. In provisions listing duties of the Universal Newborn Screening Advisory Committee, provides that (i) if the Department of Public Health approves (rather than recommends) the addition of a condition recommended by the Committee, the Department must inform the State Laboratory within a specified time; (ii) the State Laboratory shall implement newborn screening for the approved conditions within 2 years; (iii) if the Department does not approve (rather than recommend) the condition, the Department must provide information as to why the decision was made and what gaps of information are needed for reconsideration; and (iv) the report to the Governor and the General Assembly is due by December 31, 2027 (rather than January 1, 2028). Makes technical changes. Effective immediately.

Statutes affected:
Introduced: 410 ILCS 240/2, 410 ILCS 265/1, 410 ILCS 265/5, 410 ILCS 445/15
Engrossed: 410 ILCS 240/2, 410 ILCS 265/5
Enrolled: 410 ILCS 240/2, 410 ILCS 265/5