410 ILCS 265

410 ILCS 265/1

(410 ILCS 265/1) Sec. 1. Short title. This Act may be cited as the Genetic and Metabolic Diseases Advisory Committee Act. (Source: P.A. 95-695, eff. 11-5-07.)

410 ILCS 265/5 Universal Newborn Screening Advisory Committee

(410 ILCS 265/5) Sec. 5. Universal Newborn Screening Advisory Committee. (a) The Director of Public Health shall create the Universal Newborn Screening Advisory Committee to advise the Department of Public Health regarding issues relevant to newborn screenings of metabolic diseases. (b) The Universal Newborn Screening Advisory Committee shall: (1) Conduct reviews of any condition added to the federal Recommended Uniform Screening Panel pursuant to Section 2 of the Newborn Metabolic Screening Act within one year of addition to the Recommended Uniform Screening Panel. (2) Conduct reviews within one year of any condition that meets the following criteria once both criteria have been met: (A) there is a newborn screening assay available for the condition; and (B) there is a therapeutic intervention or treatment approved by the United States Food and Drug Administration for the condition. (3) Following review of each condition, make a formal recommendation to the Department of Public Health on whether to add the condition to the newborn screening panel. If the Department approves the addition of the condition, the Department must inform the State Laboratory within 60 days of receiving the recommendation. The State Laboratory shall implement newborn screening for the approved conditions within 2 years. If the Department does not approve the condition, the Department must provide information as to why the decision was made and what gaps of information are needed for reconsideration. (4) Submit to the Governor's Office and the General Assembly by December 31, 2027 and each year thereafter, a list of the conditions the Committee reviewed, the Committee's recommendations, the Department of Public Health's decisions, and the status of implementation in the lab. Any recommendations not to add a condition shall include information from the Committee as to why the decision was made, what gaps of information need to be met for reconsideration along with processes to initiate reconsideration. (5) Advise the Department regarding issues relevant to its Genetics Program. (6) Advise the Department regarding optimal laboratory methodologies for screening of the targeted conditions. (7) Recommend to the Department consultants who are qualified to diagnose a condition detected by screening, provide management of care, and genetic counseling for the family. (8) Monitor the incidence of each condition for which newborn screening is done, evaluate the effects of treatment and genetic counseling, and provide advice on disorders to be included in newborn screening panel. (9) Advise the Department on educational programs for professionals and the general public. (10) Advise the Department on new developments and areas of interest in relation to the Genetics Program. (11) Address any other matters deemed appropriate by the Committee and the Director. (b-5) Nothing in this Section shall be construed to prevent the review and recommendation of additional conditions not currently on the Recommended Uniform Screening Panel. (c) The Committee shall consist of 20 members appointed by the Director of Public Health. Membership shall include physicians, geneticists, nurses, nutritionists, and other allied health professionals, as well as patients and parents. Ex officio members may be appointed, but shall not have voting privileges. (d) Members of the Committee may receive compensation for necessary expenses incurred in the performance of their duties. (Source: P.A. 104-843, eff. 8-21-26.)

410 ILCS 265

410 ILCS 265/1

410 ILCS 265/5 Universal Newborn Screening Advisory Committee

410 ILCS 265/10

410 ILCS 265/15

410 ILCS 265/99