Bill Text: NJ A2995 | 2016-2017 | Regular Session | Introduced
Bill Title: Establishes central registry for sickle cell trait diagnoses; provides for informational outreach and genetic counseling.
Spectrum: Partisan Bill (Democrat 11-0)
Status: (Introduced - Dead) 2016-10-06 - Reported and Referred to Assembly Appropriations Committee [A2995 Detail]
Download: New_Jersey-2016-A2995-Introduced.html
Sponsored by:
Assemblyman HERB CONAWAY, JR.
District 7 (Burlington)
SYNOPSIS
Establishes central registry for sickle cell trait diagnoses; provides for informational outreach and genetic counseling.
CURRENT VERSION OF TEXT
As introduced.
An Act concerning sickle cell trait and supplementing P.L.2011, c.210.
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 required by the commissioner.
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 which 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 would require the Commissioner of Health to establish a central registry of newborn patients diagnosed with sickle cell trait and would provide for 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 their children. 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.
The Centers for Disease Control and Prevention estimates that sickle cell trait occurs in approximately one in 12 African Americans, and other sources estimate that there are currently between two and three million sickle cell trait carriers living in the United States. Occurrences of sickle cell trait are not tracked with the same frequency as diagnoses of sickle cell disease or other genetic conditions, and people who are unaware that they carry sickle cell trait may unwittingly pass sickle cell trait or sickle cell disease on to their children. Sickle cell trait carriers may additionally be at a higher risk of experiencing certain health complications associated with sickle cell trait.
All children born in New Jersey are currently screened for a number of genetic and biochemical conditions at birth, including sickle cell anemia. The bill would require that, when a patient tests positive for sickle cell trait, the screening laboratory would 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 would provide the newborn's parents with information concerning the availability and benefits of genetic counseling performed by a licensed genetic counselor. This genetic counseling would 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 information in the central registry established under the bill would 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, the availability and benefits of genetic counseling.
The Commissioner of Health would be required 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 would 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 would additionally require 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.
Central registry information would be confidential, and a person who unlawfully discloses the information would 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 would be a separate and actionable offense.
