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  • NJ A2995
  • Establishes central registry for sickle cell trait diagnoses; provides for informational outreach and genetic counseling.
In Committee
Crossed OverPassedSignedDead/Failed/VetoedVeto Overridden
2016-2017 Regular Session
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.
Health and Senior Services
Reported and Referred to Assembly Appropriations Committee  (on 10/6/2016)
Date Chamber Action Description
10/6/2016 A Reported and Referred to Assembly Appropriations Committee
10/6/2016 Assembly Health and Senior Services Hearing (10:00 10/6/2016 Committee Room 11, 4th Floor)
2/16/2016 A Introduced, Referred to Assembly Health and Senior Services Committee
Date Motion Yea Nay Other
Detail 10/6/2016 Assembly Health and Senior Services Committee: Reported Favorably 9 0 4