Establishes central registry for sickle cell trait diagnoses; provides for informational outreach and genetic counseling.

A1701

ASSEMBLY, No. 1701

STATE OF NEW JERSEY

222nd LEGISLATURE

�

PRE-FILED FOR INTRODUCTION IN THE 2026 SESSION

Sponsored by:

Assemblywoman VERLINA REYNOLDS-JACKSON

District 15 (Hunterdon and Mercer)

Assemblyman� CHIGOZIE U. ONYEMA

District 28 (Essex and Union)

Co-Sponsored by:

Assemblywomen Murphy, Quijano, Carter, Assemblyman Stanley,
Assemblywoman Speight and Assemblyman Venezia

SYNOPSIS

���� Establishes central registry for sickle cell trait
diagnoses; provides for informational outreach and genetic counseling.

CURRENT VERSION OF TEXT

���� Introduced Pending Technical Review by Legislative
Counsel.

��

An Act

concerning sickle cell trait 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.� If a newborn
screening for hereditary disorders performed pursuant to section 4 of P.L.1981,
c.502 (C.26:5B-4), P.L.1977, c.321 (C.26:2-110 et seq.), or any other
applicable law or regulation detects the presence of sickle cell trait, the
laboratory performing the screening shall notify the physician responsible for
the newborn�s care and shall document the patient�s information in the central
registry established pursuant to section 2 of
P.L. , c. (C. ) (pending
before the Legislature as this bill) in a manner and on forms prescribed by the
Commissioner of Health.

���� b.��� The physician
responsible for the newborn�s care shall provide the patient�s parents with
information concerning the availability and benefits of genetic counseling
performed by a genetic counselor licensed pursuant to P.L.2009, c.41
(C.45:9-37.111 et seq.).� Genetic counseling concerning a diagnosis of sickle
cell trait shall include, but not be limited to, information concerning the
fact that one or both of the parents carries sickle cell trait and the risk
that other children born to the parents may carry sickle cell trait or may be
born with sickle cell disease.

���� 2.��� a.� The Commissioner of
Health shall establish a central registry of patients diagnosed with sickle
cell trait.� The information in the central registry shall be used for the
purposes of compiling statistical information and assisting the provision of follow-up
counseling, intervention, and educational services to patients and to the
parents of patients who are listed in the registry including, but not limited
to, information concerning the availability and benefits of genetic counseling
performed by a genetic counselor licensed pursuant to P.L.2009, c.41
(C.45:9-37.111 et seq.).

���� b.��� The commissioner shall
establish a system to notify the parents of patients who are listed in the
registry that follow-up consultations with a physician are recommended for
children diagnosed with sickle cell trait.� Such notifications shall be
provided: at least once when the patient is in early adolescence, when the
patient may begin to participate in strenuous athletic activities that could
result in adverse symptoms for a person with sickle cell trait; at least once
during later adolescence, when the patient should be made aware of the
reproductive implications of sickle cell trait; and at such other intervals as
the commissioner may require.�

���� c.���� The commissioner shall
establish a system under which the Department of Health shall make reasonable
efforts to notify patients listed in the registry who reach the age of 18 years
of the patient�s inclusion in the registry and of the availability of educational
services, genetic counseling, and other resources that may be beneficial to the
patient.

���� d.��� Information on newborn
infants and their families compiled pursuant to this section may be used by the
department and agencies designated by the commissioner for the purposes of
carrying out this act, but otherwise the information shall be confidential and
not divulged or made public so as to disclose the identity of any person to whom
it relates, except as provided by law.� A person who discloses information in
violation of this section is guilty of a disorderly persons offense.� Each
disclosure made in violation of this section is a separate and actionable
offense.

���� 3.��� This act shall take
effect on the 90th day after the date of enactment.

STATEMENT

���� This bill
requires the Commissioner of Health
(commissioner) to establish a central registry of newborn patients diagnosed
with sickle cell trait and to provide information about counseling,
intervention, and educational services to patients and their parents.� Sickle
cell trait is the condition of carrying one sickle cell gene, which means the
person is at risk for passing the gene on to his children and may be at risk of
experiencing certain health complications.� A person born with two sickle cell
genes has sickle cell disease, an inherited blood disorder most commonly
characterized by chronic anemia and periodic episodes of pain.

���� Currently, all children born
in New Jersey are screened for a number of genetic and biochemical conditions
at birth, including sickle cell anemia.� Under the bill, when a patient tests
positive for sickle cell trait, the screening laboratory will be required to
notify the physician responsible for the newborn�s care and document the
diagnosis of sickle cell trait in the central registry established under the
bill.� The physician is to provide the newborn�s parents with information
concerning the availability and benefits of genetic counseling performed by a
licensed genetic counselor.� This genetic counseling is to include, at a
minimum, information concerning the fact that one or both of the parents
carries sickle cell trait and the risk that other children born to the parents
may carry sickle cell trait or may be born with sickle cell disease.

���� The bill requires the
commissioner to establish a system to notify the parents of patients who are
listed in the registry that follow-up consultations with a physician may be
beneficial for children diagnosed with sickle cell trait.� Such notifications will
be provided: at least once when the patient is in early adolescence, when the
patient may begin to participate in strenuous athletic activities that could
result in adverse symptoms for a person with sickle cell trait; at least once
during later adolescence, when the patient should be made aware of the
reproductive implications of sickle cell trait; and at such other intervals as
may be required by the commissioner.� The bill additionally requires the
commissioner to establish a system under which the Department of Health would
make reasonable efforts to notify patients who have reached the age of 18 years
of the patient�s inclusion in the registry and of the availability of
educational services, genetic counseling, and other resources that may be beneficial
to the patient.

���� The information in the central
registry established under the bill will be used for the purposes of compiling
statistical information and assisting the provision of follow-up counseling,
intervention, and educational services to patients and to the parents of
patients who are listed in the registry.� Central registry information will be
confidential, and a person who unlawfully discloses the information will be
guilty of a disorderly persons offense, which is punishable by imprisonment for
up to six months, a $1,000 fine, or both. Each unlawful disclosure is a
separate and actionable offense.