New Jersey health officials aim to add genomic sequencing, a new technology that allows scientists to document a person's entire DNA, to the state's mandated newborn blood testing program.
Chairman Ernest Post said it would take at least five years to sort out the practical and ethical implications of introducing the technology. Member of the state Newborn Screening Advisory Review Committee. But Post said it's an urgent matter as both public health officials in other states and private industry race to adopt it as a tool to more thoroughly screen for illnesses in babies.
Speaking at the semi-annual committee meeting on Tuesday, Post said: Subcommittee established last fall To consider possible adoption, the committee must produce recommendations and a final report before reconvening in November.
The committee could then promote those recommendations as a template for legislation, Post said, ensuring recommendations come from state health officials rather than “laymen who aren't scientifically savvy.”
“There are a number of important issues that need to be addressed before that can happen here,” he added.
The committee will also consider whether genome sequencing will be an optional additional screening or part of mandatory testing, and how it will be funded in either case.
The technology is already commercially available and low-income parents cannot afford it, making its use a capital issue, committee members said.
American Civil Liberties Union I objected The use of genomic sequencing in newborn blood testing programs has raised concerns about police access to bloodstain records and the privacy of DNA sequencing data.
If New Jersey were to adopt genome sequencing, policymakers would need to build a “true privacy infrastructure to ensure genomic data is not misused,” said ACLU-NJ staff attorney Dillon Reisman. he said.
“What we are talking about is information from children and the potential for states and other actors to use that data to monitor and monitor children and their families throughout their lives. “There is,” Reisman said. “If the goal is the health of children, it is not in their best interest to have wild genomic data left available for anyone to exploit.”
Concerns about health data privacy have led several New Jersey parents to federal class action lawsuit Last fall, he challenged the state over New Jersey's newborn testing program. In the ongoing case, the parents say the hospital did not give their informed consent when they pricked their baby's heel for a blood test, and that the hospital removed the blood samples (for uses that authorities have refused to disclose). He said he objected to the state keeping the bloodspots (known as blood spots) for 23 years.
situation We are currently negotiating He worked with attorneys from the Institute for Justice, a Virginia-based public interest law firm that filed the lawsuit, to resolve the case. The judge ordered both sides to submit a joint status report on the case by June 4.
Brian Morris, an attorney for the institute, told the New Jersey Monitor that he is “not as optimistic as we are” about reaching an agreement.
“If we cannot come to a resolution voluntarily to ensure that New Jersey's plan complies with constitutional requirements, we are happy, able and excited to have the courts do it for us,” Morris said. “We're doing it,” Morris said.
Regarding genome sequencing, he echoed Reisman's call for strong requirements to ensure parental informed consent and protect infants' Fourth Amendment rights to freedom from unreasonable search and seizure. requested.
“These constitutional guardrails prevent Trenton officials from saying, “We know what's best. We're not going to ask parents, we're just going to accept this information.'' Morris said.
If the goal is children's health, leaving wild genomic data out there for anyone to exploit does not help children's health.
– Dillon Reisman, ACLU-NJ Staff Attorney
New Jersey's newborn blood testing program, which began in 1964, now tests 100,000 infants born in the Garden State each year for 61 diseases. This is mandatory, and only family members can opt out due to religious objections.
At Tuesday's meeting, committee members heard a report from Miriam Schacter, program manager for the state's Newborn Screening Laboratory. He said program representatives are in the process of visiting 45 birthing hospitals in New Jersey to educate them about the program. Their main goal is to reduce data collection and blood swab deficiencies and get samples to the lab faster, she added.
Committee members also announced that New Jersey will participate in a pilot program to track congenital cytomegalovirus, which can cause lifelong health problems such as hearing and vision loss, seizures, microencephaly, and developmental delays. I also heard the researchers' reports on what happened. Although the newborn blood screening program does not currently test for this disease, New Jersey has received federal funding to develop a public health response to this disease in infants and children up to 6 years of age. are being tracked.
Get the morning headlines delivered to your inbox
