The bill amends the Public Health Code to update the requirements for newborn screening tests administered by health professionals. It specifies that health professionals in charge of a newborn's care must conduct tests for conditions including phenylketonuria, galactosemia, hypothyroidism, maple syrup urine disease, biotinidase deficiency, sickle cell anemia, congenital adrenal hyperplasia, medium-chain acyl-coenzyme A dehydrogenase deficiency, and Krabbe disease. The bill also clarifies that informed consent requirements do not apply to these tests and mandates that results must be reported to the infant's parents or guardians. Additionally, it allows the department to charge a fee for the tests, which must be adjusted annually based on the Consumer Price Index.
Further provisions include the establishment of a schedule for the retention and disposal of blood specimens used for testing, ensuring compliance with national standards and confidentiality for medical research. The department is required to rewrite its informational pamphlet regarding the testing program and may offer to draw an additional blood specimen for future identification purposes, with the option for parents to accept this offer. The bill emphasizes the importance of preserving the confidentiality of test subjects and outlines the conditions under which the department may provide hardship waivers for testing fees.
Statutes affected: House Introduced Bill: 333.5431