P.L. 2019, c.390 (S974 1R)

An Act concerning screening newborn infants for spinal muscular atrophy and supplementing Title 26 of the Revised Statutes.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. a. Each infant born in this State shall be tested for the genetic mutations associated with spinal muscular atrophy.

b. The Commissioner of Health shall develop a comprehensive program of follow-up services and procedures in the event a newborn tests positive for one or more genetic markers associated with spinal muscular atrophy, which services and procedures shall include, at a minimum:

(1) genetic counseling for the parents of the newborn concerning the risk that one or both parents is a carrier of the genetic mutation associated with spinal muscular atrophy, and the risk that other children born to the parents may carry the mutation, pass it on to their own offspring, or may be born with spinal muscular atrophy; and

(2) information concerning available treatment options for spinal muscular atrophy.

c. The Department of Health may charge a reasonable fee to administer tests performed pursuant to this section. The amount of the fee and the procedures for collecting the fee shall be determined by the Commissioner of Health.

d. The Commissioner of Health shall adopt rules and regulations, pursuant to the “Administrative Procedure Act,” P.L.1968, c.410 (C.52:14B-1 et seq.), necessary to carry out the purposes of this section.

2. This act shall take effect on the ¹[90th day after] first day of the seventh month next following¹ the date of enactment, except that the Commissioner of Health shall take any anticipatory administrative action in advance thereof as may be necessary to implement the provisions of this act.

Requires newborn infants be screened for spinal muscular atrophy.