I. The physician, hospital, nurse midwife, midwife, or other health care provider attending a newborn child shall test a newborn child for metabolic disorders. Such tests shall include, but not be limited to, phenylketonuria, galactosemia, homocystinuria, maple syrup urine disease, and hypothyroidism. Additional disorders shall be added to the newborn screening panel based upon, but not limited to, the following considerations:
(a)The disorder is well-defined with a known incidence.
(b)The disorder is associated with significant morbidity and/or mortality.
(c)The disorder can be detected with a screening test that is ethical, safe, accurate, and cost-effective.
(d)Effective treatment exists for the disorder, and that early treatment, meaning before the onset of symptoms, is more effect
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I. The physician, hospital, nurse midwife, midwife, or other health care provider attending a newborn child shall test a newborn child for metabolic disorders. Such tests shall include, but not be limited to, phenylketonuria, galactosemia, homocystinuria, maple syrup urine disease, and hypothyroidism. Additional disorders shall be added to the newborn screening panel based upon, but not limited to, the following considerations:
(a) The disorder is well-defined with a known incidence.
(b) The disorder is associated with significant morbidity and/or mortality.
(c) The disorder can be detected with a screening test that is ethical, safe, accurate, and cost-effective.
(d) Effective treatment exists for the disorder, and that early treatment, meaning before the onset of symptoms, is more effective in improving health outcomes than later treatment.
II. Notwithstanding any provision of law to the contrary, the commissioner of the department of health and human services shall establish fees, pursuant to RSA 541-A, to be paid directly by hospitals in their entirety, acknowledging that fees may be offset by reimbursement from commercial insurance, Medicaid, or other payors, paid to hospitals for the tests required under paragraph I. Nothing in this section is intended to prescribe the reimbursement method or the reimbursement level from a payor. The commissioner shall structure these fees to be reimbursable without out of pocket cost to the patient pursuant to 45 C.F.R. 147.130. All such fees shall be paid into the newborn screening fund, hereby established in the state treasury. Moneys from the newborn screening fund established under this section shall be nonlapsing and shall be continually appropriated for use by the department to cover laboratory analysis and related newborn screening program costs.
III. The department of health and human services shall establish a newborn screening advisory committee which shall include a member of the oversight committee on health and human services, established in RSA 126-A:13, and representation from health care subspecialties, as determined by the department.
III-a. The department shall ensure that the laboratory analyzing tests authorized under paragraph I destroys any samples no later than 6 months following the completion of testing. Any samples taken for newborn screening shall only be used for tests required under this section. No such samples may be used for other research or DNA testing purposes unless authorized by the parent or guardian.
IV. The department shall make an annual report commencing on January 1, 2006 to the oversight committee on health and human services relative to newborn screening tests which shall include, but not be limited to the number and type of tests performed and their fiscal impact.
V. No whole-genome DNA sequencing shall be performed pursuant to this chapter unless the general court authorizes such sequencing by statute.