Bill > A1809

Introduced Session

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.

Committee Categories

Verlina Reynolds-Jackson (D)*,  Linda Carter (D),  Carol Murphy (D),  Annette Quijano (D),  Shanique Speight (D),  Sterley Stanley (D),  Michael Venezia (D), 

Introduced, Referred to Assembly Health Committee (on 01/09/2024)

Official Document