Conaway & Wimberly Bill to Create Sickle Cell Trait Registry Clears Assembly

Legislation Also Would Promote Genetic Counseling, Educational Services

(TRENTON) – Legislation Assemblymen Herb Conaway, M.D. and Benjie Wimberly sponsored to establish a confidential central registry of newborns diagnosed with sickle cell trait was approved by the full Assembly on Thursday, 50-3-9.

The bill (A-3356) would require the Department of Health to create the registry, which would serve to make individuals aware of their sickle cell trait status. The legislation would also promote counseling, intervention and educational services for patients and their parents.

“Individuals with sickle cell trait can make the best choices about their health only if they know they have the trait,” said Conaway (D-Burlington). “This bill will help empower those who carry sickle cell trait to make informed decisions.”

As is the case for several conditions, all New Jersey newborns are screened for sickle cell anemia, and the Department of Health requires that their parents be informed of the results. The bill would require screening laboratories to also notify a newborn’s physician and document the diagnosis in the central registry if, upon screening, a patient tests positive for sickle cell trait. The Department of Health would coordinate notification of the patient.

The bill would also require physicians to provide the patient’s parents with information on the benefits of consultation with a licensed genetic counselor. Such counseling would include, at minimum, notifying the parents that at least one of them carries sickle cell trait and that any other child born to them may also carry sickle cell trait or be born with sickle cell anemia.

“A simple blood test is all it takes for an individual to know whether he or she carries the sickle cell trait, but the majority of Americans are unaware of their status,” said Wimberly (D-Bergen/Passaic). “By increasing the number of people who know whether they are carriers of this trait, we can potentially decrease the prevalence of sickle cell disease, an illness that can lead to very serious chronic health complications.”

An individual carrying one sickle cell gene may potentially pass the gene on to his or her children. A person born with two of the genes will have sickle cell disease, a congenital single-gene blood disorder most commonly characterized by chronic anemia and periodic episodes of pain.

An estimated 3 million people in the United States carry sickle cell trait, according to the Centers for Disease Control and Prevention. Newborn screening programs in all 50 states require the identification of individuals with sickle cell trait or sickle cell disease shortly after birth, but many with sickle cell trait live unaware of their status.

The bill was released by the Assembly Appropriations Committee on November 10.