§ 31-12-6 — System for prevention of serious illness, severe physical or developmental disability, and death resulting from inherited metabolic and genetic disorders; establishment of Newborn Screening and Genetics Advisory Committee

(a) The department shall promulgate rules and regulations creating a newborn screening system for the prevention of serious illness, severe physical or developmental disability, and death caused by inherited metabolic and genetic disorders as identified by the department. The department shall be authorized to consider recommendations from the Newborn Screening and Genetics Advisory Committee established pursuant to subsection (i) of this Code section, to include disorders which are added to the federal Recommended Uniform Screening Panel and may be identified in the future to result in serious illness, severe physical or developmental disability, and death if undiagnosed and untreated. (b) The entire process for screening, retrieval, and diagnosis must occur within time frames established by the department pursuant to rules and regulations, and the system shall be structured to meet this critical need. (c) The department shall be responsible for the screening of all newborns for the disorders enumerated by the department and in a manner determined by the department pursuant to rules and regulations and shall be responsible for assessment of the program. When any new disorder is approved by the department after recommendation by the Newborn Screening and Genetics Advisory Committee established pursuant to subsection (i) of this Code section, the department shall submit a budget request to the Office of Planning and Budget prior to the General Assembly's next legislative session seeking appropriations to cover the new disorder added to the newborn screening system. The department shall begin screening newborns for any such new disorder no later than 18 months after such appropriation becomes effective. (d) The department shall, to the extent state or federal funds are available for such purposes, including but not limited to funds provided under Title V of the Social Security Act, the Maternal and Child Health Services Block Grant, provide for retrieving potentially affected screenees back into the health care system, accomplishing specific diagnoses, initiating and continuing therapy, and assessing the program. (e) The department shall utilize appropriate existing resources whenever possible and shall cause the coordination and cooperation of agencies and organizations having resources necessary for the creation of an effective system. (f) The department shall be authorized to establish and periodically adjust, by rule and regulation, fees associated with the screening, retrieval, and diagnosis conducted pursuant to this Code section to help defray or meet the costs incurred by the department. In no event shall the fees exceed such costs, both direct and indirect, in providing such screenings and related services, provided that no services shall be denied on the basis of inability to pay. All fees paid thereunder shall be paid into the general fund of the State of Georgia. (g) The department shall allow any laboratory licensed in Georgia and authorized to perform screening of newborn infants in any state using normal pediatric reference ranges to conduct the analysis required pursuant to this Code section; provided, however, that the screening may be conducted by a laboratory located outside of Georgia if approved by the board. The testing performed by such laboratory must include testing for newborn diseases as required by law or regulation, except as otherwise provided by the department, and shall provide test results and reports consistent with law and with policies, procedures, and regulations of the department. (h) The requirements of this Code section with regard to screening, retrieval, and diagnosis shall not apply to any infant whose parents object in writing thereto on the grounds that such tests and treatment conflict with their religious tenets and practices. (i) There is established the Newborn Screening and Genetics Advisory Committee. The advisory committee shall consist of not less than 11 nor more than 21 members to be appointed by the commissioner. Each member of the advisory committee shall serve a three-year term and until the appointment of his or her successor. Any member may be reappointed by the commissioner. The advisory committee shall meet at least two times per year or upon the call of the chairperson. The advisory committee shall consider and make recommendations to the commissioner related to the inclusion of screening for any disorder added to the federal Recommended Uniform Screening Panel (RUSP), within one year of such addition. As part of such recommendations, the advisory committee shall advise the commissioner on the estimated cost to the department for screening for such disorder. The advisory committee shall be authorized to establish ad hoc subcommittees and to advise the commissioner on procedures for collection and transmission of specimens and the recording of diagnostic results.

Legislative History

Amended by 2021 Ga. Laws 200,§ 2, eff. 7/1/2021. Amended by 2017 Ga. Laws 190,§ 2, eff. 7/1/2017. Amended by 2006 Ga. Laws 573,§ 1, eff. 1/1/2007.