§ 31-12-6. System for prevention of serious illness, severe physical or developmental disability, and death resulting from inherited metabolic and genetic disorders

GA Code § 31-12-6 (2018) (N/A)
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(a) The department shall promulgate rules and regulations creating a system for the prevention of serious illness, severe physical or developmental disability, and death caused by genetic conditions, such as phenylketonuria, galactosemia, homocystinuria, maple syrup urine disease, hypothyroidism, congenital adrenal hyperplasia, Krabbe disease, and such other inherited metabolic and genetic disorders as may be identified in the future to result in serious illness, severe physical or developmental disability, and death if undiagnosed and untreated. The system shall have five components: screening newborns for the disorders; retrieving potentially affected screenees back into the health care system; accomplishing specific diagnoses; initiating and continuing therapy; and assessing the program.

(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 and in a manner determined by the department pursuant to rules and regulations and shall be responsible for assessment of the program; provided, however, that screening for Krabbe disease shall be conducted separately at the option of the parent or parents.

(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; provided, however, that the fees for screening for Krabbe disease shall be paid directly by the parents to the laboratory. 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 testing 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 for Krabbe disease 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 for Krabbe disease, and shall provide test results and reports consistent with law and with policies, procedures, and regulations of the department.

(h) No later than January 1, 2007, the Georgia Department of Audits and Accounts shall conduct an assessment evaluating the efficiency and effectiveness of the newborn screenings conducted by the Georgia Public Health Laboratory pursuant to this Code section. If it is determined that private laboratories can provide testing at a lower cost than the Georgia Public Health Laboratory, the department shall issue a request for proposals to qualified vendors including any private laboratory licensed in Georgia as established in subsection (g) of this Code section. The Georgia Public Health Laboratory shall be eligible to respond to such request for proposals.

(i) 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.