(A)A child born in this State, except a child born of a parent who objects on religious grounds and indicates this objection before testing on a form promulgated in regulation by the Department of Health and Environmental Control, shall have neonatal testing to detect inborn metabolic errors and hemoglobinopathies.
(B)(1) Information obtained as a result of the tests conducted pursuant to this section is confidential and may be released only to a parent or legal guardian of the child, the child's physician, and the child when eighteen years of age or older when requested on a form promulgated in regulation by the department.
(2)If the results of the neonatal testing are abnormal, the department may recommend additional testing and, in addition to the notification requirements established
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(A) A child born in this State, except a child born of a parent who objects on religious grounds and indicates this objection before testing on a form promulgated in regulation by the Department of Health and Environmental Control, shall have neonatal testing to detect inborn metabolic errors and hemoglobinopathies. (B)(1) Information obtained as a result of the tests conducted pursuant to this section is confidential and may be released only to a parent or legal guardian of the child, the child's physician, and the child when eighteen years of age or older when requested on a form promulgated in regulation by the department. (2) If the results of the neonatal testing are abnormal, the department may recommend additional testing and, in addition to the notification requirements established in Section 44-37-30(B)(1), notify one or more of the following to ensure timely provision of follow-up services: (a) the physician or health care provider attending the child's birth or his designee; (b) the physician or health care provider responsible for newborn care in the hospital; or (c) the physician or health care provider identified for follow-up care after the newborn's discharge from the hospital. (3) If the results of the neonatal testing are abnormal, time-sensitive, or time-critical, the department may, in addition to notification requirements established in Section 44-37-30(B)(1) and (2), notify and provide information about the abnormal, time-sensitive, or time-critical screening results to a qualified pediatric specialist in accordance with guidelines established by the department's Newborn Screening Advisory Committee for the timely provision of the follow-up services. (C) A blood sample obtained pursuant to this section is confidential and may be released only as the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, directs the department at the time of testing or at any time after that on a form promulgated in regulation by the department. (D)(1) Unless otherwise directed pursuant to this subsection, a blood sample obtained pursuant to this section must be stored by the department at minus 20° centigrade and may be released for purposes of confidential, anonymous scientific study. The release of a blood sample must conform with regulations promulgated by the department. At the time of testing or at any time after that, on a form promulgated in regulation by the department, the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, may direct the department to: (a) return a blood sample in its entirety and any test results not less than two years after the date of testing; (b) destroy a blood sample in a scientifically acceptable manner not less than two years after the date of the testing; or (c) store a blood sample at minus 20° centigrade but not release the blood sample for confidential, anonymous scientific study. (2) A blood sample released for confidential, anonymous study pursuant to this section must not contain information which may be used to determine the identity of the donor. A blood sample released pursuant to this section may contain demographic or other statistical information. If scientific study identifies genetic information that may benefit the child, the department may notify confidentially the parent or legal guardian, or the child if eighteen years of age or older, of this information. (E)(1) A blood sample that has not been stored at minus 20° centigrade before the effective date of this section must be destroyed in a scientifically acceptable manner six months from the effective date of this section unless a parent or legal guardian of a child from whom a blood sample was obtained, or the child if eighteen years of age or older, requests return of the blood sample on a form provided by the department. (2) A blood sample stored at minus 20° centigrade pursuant to this section before the effective date of this section must be retained as prescribed in subsection (D) unless directed by the parent or legal guardian of the child from whom a blood sample was obtained to destroy or return the blood sample. (F) The department shall promulgate regulations necessary for the implementation of this section. All forms must include information concerning the benefits of neonatal testing and storage of a blood sample. (G) A person who violates this section or the regulations promulgated pursuant to this section or who provides or obtains or otherwise tampers with a blood sample collected pursuant to this section is guilty of a misdemeanor and, upon conviction, may be fined not more than fifty thousand dollars or imprisoned for not more than three years. (H) The department shall establish the Newborn Screening Advisory Committee to review the feasibility and advisability of including additional metabolic, genetic, and congenital disorders in the neonatal testing conducted pursuant to this section. The committee must be multidisciplinary and composed of members deemed appropriate by the department.