ASSEMBLY HEALTH COMMITTEE
STATEMENT TO
ASSEMBLY, No. 1988
STATE OF NEW JERSEY
DATED: FEBRUARY 3, 2022
The Assembly Health Committee reports favorably Assembly Bill
No. 1988.
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 2
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.
This bill was pre-filed for introduction in the 2022-2023 session
pending technical review. As reported, the bill includes the changes
required by technical review, which has been performed.