Bill Text: NJ A3040 | 2018-2019 | Regular Session | Amended
Bill Title: Requires newborn infants be screened for spinal muscular atrophy.
Spectrum: Partisan Bill (Democrat 5-0)
Status: (Introduced - Dead) 2020-01-13 - Substituted by S974 (1R) [A3040 Detail]
Download: New_Jersey-2018-A3040-Amended.html
ASSEMBLY, No. 3040
STATE OF NEW JERSEY
218th LEGISLATURE
INTRODUCED FEBRUARY 8, 2018
Sponsored by:
Assemblywoman VALERIE VAINIERI HUTTLE
District 37 (Bergen)
Assemblywoman BRITNEE N. TIMBERLAKE
District 34 (Essex and Passaic)
Assemblywoman GABRIELA M. MOSQUERA
District 4 (Camden and Gloucester)
Co-Sponsored by:
Assemblywoman Murphy and Assemblyman Mejia
SYNOPSIS
Requires newborn infants be screened for spinal muscular atrophy.
CURRENT VERSION OF TEXT
As amended by the General Assembly on June 20, 2019.
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 1[mutations] mutation most commonly1 associated with spinal muscular atrophy 1subject to the following requirements:
(1) The Newborn Screening Advisory Review Committee in the Department of Health shall review and, no later than six months after the effective date of this act, submit to the Commissioner of Health a recommendation concerning best practices for screening newborns for spinal muscular atrophy.
(2) The Commissioner of Health shall have six months after the date it receives the recommendation of the Newborn Screening Advisory Review Committee submitted pursuant to paragraph (1) of this subsection to adopt the committee's recommendation, with or without revision. If the commissioner adopts the committee's recommendations with revisions or determines not to adopt the recommendations, the commissioner shall issue a written statement setting forth the reasons for that action. If the commissioner fails to take action on the recommendation within six months after receiving the recommendation, the recommendation shall be deemed adopted.
(3) Newborn screening for spinal muscular atrophy shall commence at such time as the commissioner takes action on the Newborn Screening Advisory Review Committee's recommendation, or at such time as the committee's recommendation is deemed adopted, as applicable, pursuant to paragraph (2) of this subsection. All newborn screening shall be conducted consistent with the best practices adopted pursuant to paragraph (2) of this subsection1 .
b. The Commissioner of Health shall 1, in consultation with the Office of Newborn Screening and Genetic Services in the Department of Health, the Newborn Screening Advisory Review Committee, and appropriate State officials who have medical expertise concerning newborn screening and genetic disorders,1 develop a comprehensive program of follow-up services and procedures in the event a newborn tests positive for 1[one or more genetic markers] the genetic mutation most commonly1 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 90th day after 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.
