{"data":{"id":"us-ky/krs-214.155","jurisdiction":"us-ky","citation":"KRS 214.155","heading":"Screening and tests for heritable disorders for newborns and infants --","body":"Screening for critical congenital heart disease -- Information provided to\nparent or guardian -- Application for federal grants -- Short title.\n(1) The Cabinet for He alth and Family Services shall operate a newborn screening\nprogram for heritable and congenital disorders that includes but is not limited to\nprocedures for conducting initial newborn screening tests on infants twenty -eight\n(28) days or less of age and def initive diagnostic evaluations provided by a state\nuniversity-based specialty clinic for infants whose initial screening tests resulted in\na positive test. The secretary of the cabinet shall, by administrative regulation\npromulgated pursuant to KRS Chapter 13A:\n(a) Prescribe the times and manner of obtaining a specimen and transferring a\nspecimen for testing;\n(b) Prescribe the manner of procedures, testing specimens, and recording and\nreporting the results of newborn screening tests; and\n(c) Establish and collect fees to support the newborn screening program.\n(2) The administrative officer or other person in charge of each health facility caring\nfor infants twenty -eight (28) days or less of age and the person required in\npursuance of the provisions of KRS 21 3.046 shall register the birth of a child and\ncause to have administered to every such infant or child in his, her, or the facility's\ncare tests for heritable disorders, including but not limited to phenylketonuria\n(PKU), sickle cell disease, congenital hypothyroidism, galactosemia, medium-chain\nacyl-CoA dehydrogenase deficiency (MCAD), very long -chain acyl -CoA\ndeficiency (VLCAD), short -chain acyl -CoA dehydrogenase deficiency (SCAD),\nmaple syrup urine disease (MSUD), congenital adrenal hyperplasia (CAH),\nbiotinidase disorder, cystic fibrosis (CF), 3 -methylcrotonyl-CoA carboxylase\ndeficiency (3MCC), 3 -OH 3 -CH3 glutaric aciduria (HMG), argininosuccinic\nacidemia (ASA), beta -ketothiolase deficiency (BKT), carnitine uptake defect\n(CUD), citrullinemia (CIT), gluta ric acidemia type I (GA I), Hb S/beta -thalassemia\n(Hb S/Th), Hb S/C disease (Hb S/C), homocystinuria (HCY), isovaleric acidemia\n(IVA), long -chain L -3-OH acyl -CoA dehydrogenase deficiency (LCAD),\nmethylmalonic acidemia (Cbl A,B), methylmalonic acidemia muta se deficiency\n(MUT), multiple carboxylase deficiency (MCD), propionic acidemia (PA),\ntrifunctional protein deficiency (TFP), tyrosinemia type I (TYR I), spinal muscular\natrophy (SMA), and krabbe disease. The listing of tests for heritable disorders to be\nperformed shall include all conditions consistent with the recommendations of the\nAmerican College of Medical Genetics.\n(3) The administrative officer or other person in charge of each health facility caring\nfor infants twenty -eight (28) days or less of age  and the person required in\npursuance of the provisions of KRS 213.046 shall register the birth of a child and\ncause to have administered to every such infant or child in his, her, or the facility's\ncare a screening for critical congenital heart disease (C CHD) prior to discharge\nunless CCHD has been ruled out or diagnosed with prior echocardiogram or\nprenatal diagnosis of CCHD.\n(4) Each health care provider of newborn care shall provide an infant's parent or\nguardian with information about the newborn scree ning tests required under\nsubsections (2) and (3) of this section. The health facility or health care provider\nshall arrange for appropriate and timely follow -ups to the newborn screening tests,\nincluding but not limited to additional diagnoses, evaluation , and treatment when\nindicated.\n(5) Nothing in this section shall be construed to require the testing of any child whose\nparents are members of a nationally recognized and established church or religious\ndenomination, the teachings of which are opposed to medical tests, and who object\nin writing to the testing of his or her child on that ground.\n(6) The cabinet shall make available the names and addresses of health care providers,\nincluding but not limited to physicians, nurses, and nutritionists, who may provide\npostpartum home visits to any family whose infant or child has tested positive for a\nnewborn screening test.\n(7) A parent or guardian shall be provided information by the health facility or health\ncare provider of newborn care about the availability and costs of screening tests not\nspecified in subsections (2) and (3) of this section. The pare nt or guardian shall be\nresponsible for costs relating to additional screening tests performed under this\nsubsection, and these costs shall not be included in the fees established for the\ncabinet's newborn screening program under subsection (1) of this sec tion. All\npositive results of additional screening of these tests shall be reported to the cabinet\nby the health facility or health care provider.\n(8) (a) For the purposes of this subsection, a qualified laboratory means a clinical\nlaboratory not operated by the cabinet that is accredited pursuant to 42 U.S.C.\nsec. 263a, licensed to perform newborn screening testing in any state, and\nreports its screening results using normal pediatric reference ranges.\n(b) The cabinet shall enter into agreements with publi c or private qualified\nlaboratories to perform newborn screening tests if the laboratory operated by\nthe cabinet is unable to screen for a condition specified in subsection (2) of\nthis section.\n(c) The cabinet may enter into agreements with public or priva te qualified\nlaboratories to perform testing for conditions not specified in subsection (2) of\nthis section. Any agreement entered into under this paragraph shall not\npreclude a health facility or health care provider from conducting newborn\nscreening tests for conditions not specified in subsections (2) and (3) of this\nsection by utilizing other public or private qualified laboratories.\n(9) The secretary for health and family services or his or her designee shall apply for\nany federal funds or grants avail able through the Public Health Service Act and\nmay solicit and accept private funds to expand, improve, or evaluate programs to\nprovide screening, counseling, testing, or specialty services for newborns or\nchildren at risk for heritable disorders.\n(10) As used in this section, \"health facility\" has the same meaning as in KRS 216B.015.\n(11) This section shall be cited as the James William Lazzaro and Madison Leigh Heflin\nNewborn Screening Act.","path":["KRS Chapter 214"],"source_url":"https://apps.legislature.ky.gov/law/statutes/statute.aspx?id=56426","current_through":"Includes enactments through the 2026 Regular Session","vintage":"09/05/2026","retrieved_at":"2026-09-05T20:52:18Z","sha256":"b0fd3c6eac23369940f671013e4f74c69b1cea14507321c3662ea999877c09dc","source_id":"us-ky","stale":false,"prev":"us-ky/krs-214.150","next":"us-ky/krs-214.160"},"notice":"GroundRules: Original legal text. Not legal advice."}