Sickle cell is a genetic disorder that causes cells to be misshapen or ‘sickled’ causing early red cell death and a number of associated complications such as pain in the joints, dizziness, fatigue, and shortness of breath.
People inherit the disorder when both of their parents carry the genetic trait for the disease. It is most prevalent in African Americans than in any other U.S. racial group.
Recently, the New Jersey State Assembly passed a bill establishing a central registry for sickle cell trait diagnoses that provides informational outreach and genetic counseling.
The bill’s primary sponsors were Assemblyman Herb Conaway Jr. (D-Burlington), Benjie E. Wimberly (D-Passaic), and Raj Mukherji (D-Hudson).
The bill passed 60 to 11. Six lawmakers abstained and three did not vote at all.
Assemblyman Brian Bergen voted no on the measure. At a February session in Trenton, the Morris County Republican said he thinks the bill is necessary, however, he voiced concerns about medical privacy and the potential for misuse of medical information in marginalized communities.
“It’s a great idea and done with the best intentions. But what happens when we discover other genetic indicators that predispose people to other things, and then this body determines that they should be entered into a database?” Bergen said.
Bergen has advocated for medical privacy in the past. In December 2021, he was one of several Republican Assemblymembers to defy a proof of vaccination mandate at the Statehouse, according to the North Jersey Record.
“Any child who screens for the sickle cell trait will be entered into a government-managed registry without parents’ consent and without any opportunity to remove themselves from the registry over the course of their lifetime,” Bergen said. “That should draw a pause from everyone. There are privacy concerns and individual freedom concerns. This bill directly targets African Americans. Eight percent of African Americans born in this state will be entered into this registry.”
Assemblyman Conaway is a healthcare professional who earned a medical degree from Jefferson Medical College. Conaway addressed Bergen’s concerns.
“We have a duty to protect the records from being viewed by people who have no rights to view the records. It’s very tightly controlled. All medical records are treated the same way. We have registries that operate all the time. We have a cancer registry, an HIV registry, and a registry for those born with disabilities,” Conaway said.
Assemblyman Conaway said he believes registries will aid in medical development and can assist healthcare providers in identifying communities susceptible to specific diseases and illnesses.
“Registries themselves are very common. There are registries maintained by University Hospital and the CDC. Registries help us see what therapies work best, disseminate that information, and make sure that people who have conditions that need management over time get the advice they need on an ongoing basis.” Assemblyman Conaway said. “This system of digitized health information has so many benefits to the delivery of healthcare far beyond what we can do in a paper-driven system.”
The Senate version of the bill was recently introduced in the Senate Health and Human Services Committee, though hearings on the measure have yet to be scheduled.
