ASSEMBLY, No. 1988
STATE OF NEW JERSEY
220th LEGISLATURE
PRE-FILED FOR INTRODUCTION IN THE 2022 SESSION
Sponsored by:
Assemblyman HERB CONAWAY, JR.
District 7 (Burlington)
Assemblyman BENJIE E. WIMBERLY
District 35 (Bergen and Passaic)
Assemblyman RAJ MUKHERJI
District 33 (Hudson)
Co-Sponsored by:
Assemblywoman Murphy
SYNOPSIS
Establishes central registry for sickle cell trait diagnoses; provides for
informational outreach and genetic counseling.
CURRENT VERSION OF TEXT
As reported by the Assembly Health Committee with technical review.
A1988 CONAWAY, WIMBERLY
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AN ACT concerning sickle cell trait and supplementing Title 26 of 1
the Revised Statutes. 2
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BE IT ENACTED by the Senate and General Assembly of the State 4
of New Jersey: 5
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1. a. If a newborn screening for hereditary disorders performed 7
pursuant to section 4 of P.L.1981, c.502 (C.26:5B-4), P.L.1977, 8
c.321 (C.26:2-110 et seq.), or any other applicable law or regulation 9
detects the presence of sickle cell trait, the laboratory performing 10
the screening shall notify the physician responsible for the 11
newborn’s care and shall document the patient’s information in the 12
central registry established pursuant to section 2 of 13
P.L. , c. (C. ) (pending before the Legislature as this bill) 14
in a manner and on forms prescribed by the Commissioner of 15
Health. 16
b. The physician responsible for the newborn’s care shall 17
provide the patient’s parents with information concerning the 18
availability and benefits of genetic counseling performed by a 19
genetic counselor licensed pursuant to P.L.2009, c.41 (C.45:9-20
37.111 et seq.). Genetic counseling concerning a diagnosis of 21
sickle cell trait shall include, but not be limited to, information 22
concerning the fact that one or both of the parents carries sickle cell 23
trait and the risk that other children born to the parents may carry 24
sickle cell trait or may be born with sickle cell disease. 25
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2. a. The Commissioner of Health shall establish a central 27
registry of patients diagnosed with sickle cell trait. The information 28
in the central registry shall be used for the purposes of compiling 29
statistical information and assisting the provision of follow-up 30
counseling, intervention, and educational services to patients and to 31
the parents of patients who are listed in the registry including, but 32
not limited to, information concerning the availability and benefits 33
of genetic counseling performed by a genetic counselor licensed 34
pursuant to P.L.2009, c.41 (C.45:9-37.111 et seq.). 35
b. The commissioner shall establish a system to notify the 36
parents of patients who are listed in the registry that follow-up 37
consultations with a physician are recommended for children 38
diagnosed with sickle cell trait. Such notifications shall be 39
provided: at least once when the patient is in early adolescence, 40
when the patient may begin to participate in strenuous athletic 41
activities that could result in adverse symptoms for a person with 42
sickle cell trait; at least once during later adolescence, when the 43
patient should be made aware of the reproductive implications of 44
sickle cell trait; and at such other intervals as the commissioner may 45
require. 46
c. The commissioner shall establish a system under which the 47
Department of Health shall make reasonable efforts to notify 48
A1988 CONAWAY, WIMBERLY
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patients listed in the registry who reach the age of 18 years of the 1
patient’s inclusion in the registry and of the availability of 2
educational services, genetic counseling, and other resources that 3
may be beneficial to the patient. 4
d. Information on newborn infants and their families compiled 5
pursuant to this section may be used by the department and agencies 6
designated by the commissioner for the purposes of carrying out 7
this act, but otherwise the information shall be confidential and not 8
divulged or made public so as to disclose the identity of any person 9
to whom it relates, except as provided by law. A person who 10
discloses information in violation of this section is guilty of a 11
disorderly persons offense. Each disclosure made in violation of 12
this section is a separate and actionable offense. 13
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3. This act shall take effect on the 90th day after the date of 15
enactment. 16