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Conaway, Wimberly & Mukherji Bill to Create Sickle Cell Trait Registry & Provide Information on Genetic Counseling to Patients Passes Committee

Legislation sponsored by Assembly Democrats Herb Conaway, Benjie Wimberly and Raj Mukherji to establish a confidential central registry of newborns diagnosed with sickle cell trait was advanced by the Assembly Health Committee on Thursday.

The term sickle cell disease (SCD) describes a group of red blood cell disorders a person inherits via two sickle cell genes that cause abnormal hemoglobin – a protein in red blood cells that carries oxygen throughout the body. Individuals with SCD can experience chronic or acute pain, severe anemia, enhanced susceptibility to infections and a host of other serious health problems.

An individual with sickle cell trait has one of the two genes that cause SCD. While most people with sickle cell trait will experience little to no health complications, their children can inherit SCD if the other parent also passes down a sickle cell gene.

“People with sickle cell trait cannot make the best choices about their future unless they know they have this genetic trait and understand all that it entails,” said Assemblyman Conaway, M.D. (D-Burlington). “This legislation will help empower those who carry sickle cell trait to make informed life decisions.”

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 people with sickle cell trait are unaware of their status. The measure (A-1988) would require the Department of Health (DOH) to create a central registry in New Jersey, which would serve to make individuals aware of their sickle cell trait status.

“A simple blood test is all it takes for an individual to know whether he or she carries the sickle cell trait, yet the majority of Americans are unaware of their status,” said Assemblyman 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.”

Under the bill, screening laboratories must document a newborn’s diagnosis of sickle cell trait in the confidential statewide registry and notify the physician responsible for that baby’s care. The physician must then discuss the availability and benefits of genetic counseling with the baby’s parents, which could help them learn more about the possibility of sickle cell trait or even SCD in future children.

The DOH would also establish a system to notify parents about the importance of follow-up physician consultations and to notify patients in the registry about the availability of education, genetic counseling and other beneficial resources once they reach the age of 18.

“While sickle cell trait can never become sickle cell disease, individuals with sickle cell trait can pass on the gene to their children,” said Assemblyman Mukherji (D-Hudson). “This registry would provide valuable information to individuals who don’t know they are carriers and are thinking about starting a family.”

An estimated 1.5 percent of all babies born in the United States carry sickle cell trait. The disease is most prevalent among the African American community, where approximately one in 13 babies is born with sickle cell trait and approximately one in every 365 children is born with sickle cell disease.

The bill now heads to the Assembly Speaker for further consideration.