A lawsuit against New Jersey’s baby blood storage has failed as parents sued the state, demanding the samples be destroyed after screening.
Nearly every baby born in the U.S. has blood drawn to check the risk of about 60 rare diseases, but the New Jersey Department of Health has been storing baby DNA for 23 years and allowing law enforcement and outside researchers access.
Two parents filed a class action lawsuit in November 2023, which was settled Thursday with a new directive that reduced the retention to two years.
Attorney Brian Morris, who represents the parents, said, “This is a small step in the right direction, but the state is still refusing to do the one thing that will make its retention program constitutional: ask parents for informed consent.”
The class action lawsuit was filed in 2023 after news broke of a 1996 cold case that was solved when police allegedly collected a baby’s DNA without a warrant to investigate the child’s father.
The New Jersey Department of Health reduced the retention period from 23 years to just two years after parents filed a lawsuit claiming the program violated the Fourth Amendment, which protects Americans from unreasonable government seizures.
Boonton mother Erica Jedynak, one of the plaintiffs in the case, said Thursday, “Until the state actually asks parents for consent before retaining their baby’s blood, we will continue to fight this policy in court.”
‘Parents deserve to know what the government is doing with their children’s genetic information.’
Hannah Lovaglio, a Cranbury resident and plaintiff, told DailyMail.com in November: “This is a real elder law issue. This is their body; this is their property that has been taken from them since they were five years of age, and the state does not have to provide any justification.”
Genetic testing of newborns began in the 1960s with the hope of detecting diseases and conditions that could kill a child or cause serious problems – 61 diseases and birth defects are tested for.
Nurses fill six spots on a special filter card when performing the screening, which is then sent to a laboratory for testing, but the remaining samples are kept for the specific time allowed.
According to the State of Minnesota website, samples are retained so that tests can be repeated, used to identify a missing or deceased child and for medical research.
In 2021, Brian Avis, 61, was convicted of sexually assaulting a 10-year-old girl in 1996 after New Jersey police analyzed the DNA of Avis’ child, who was born in 2012.
Although there is little data on the number of samples stored, one report states that there were 13.5 billion newborn blood spots stored nationwide in 2009.
Most states have been storing DNA from young children since 2001, while California, which stores samples indefinitely, started in 1983.
Morris, a lawyer at the Institute for Justice (IJ), told DailyMail.com in November: “New Jersey is among the worst. The biggest problem is that it is a black hole for which there are no rules.
“There is nothing stopping the New Jersey Health Department from doing anything with the samples.
‘This is not just a parent issue, it is also about digital privacy. The government can grab and take whatever it wants, and we try to protect individuals from that.”
In March, the two sides had been in talks to settle the class action lawsuit out of court.
Attorney General Matthew J. Platkin said in a March 4 letter: “Over the past several months, the parties have been engaged in settlement discussions to attempt to resolve this dispute in good faith.
“Those discussions have been productive and the parties intend to continue negotiations in the hope of reaching an agreement on a resolution that would ultimately eliminate the need for further litigation.
Platkin announced the changes to the program Thursday, but the update still does not require the state to seek informed consent before holding the blood, nor does it implement safeguards for what the state can do with the samples.
The directive explained that data and bloodstains can only be obtained through a court-issued subpoena.
Law enforcement agencies could previously gain access through a grand jury subpoena, a search warrant based on probable cause, or an administrative subpoena.
Platkin also noted that “law enforcement agencies have virtually never attempted to use this material as part of an investigation.”
But officers allegedly illegally obtained blood samples in 2021 to convict Brian Avis of raping a 10-year-old girl in 1996 and a five-year-old girl in 2003.
Boonton mother Erica Jedynak, one of the plaintiffs in the case, said Thursday, “Until the state actually asks parents for consent before withholding their baby’s blood, we will continue to fight this policy in court.”
Hannah Lovaglio, a Cranbury resident and plaintiff, told DailyMail.com in November: “This is a real elder law issue. This is their body; this is their property that has been taken from them since five years of being minors, and the state does not have to provide any justification.”
The samples came from the card of Avis’ now 12-year-old child, which led to his arrest in 2022.
Avis was sentenced to prison and is serving 17 years in New Jersey State Prison.
“There’s the Fourth Amendment right (protecting people from unreasonable government searches and seizures) and that the Supreme Court recognizes that parents have a fundamental right to protect their children and make decisions,” Morris said.
“We say the state is infringing on that.”
New Jersey has a laboratory in Trenton where samples are sent for disease testing, but the warehouse where they are stored is unknown.
The lawsuit alleged that the lab processes more than 100,000 newborn tests each year.
“This is a small step in the right direction, but the state is still refusing to do the one thing that will make its retention program constitutional: ask parents for informed consent,” Morris said Thursday.
‘It is clear that two years is better than 23 years, but the length of detention is irrelevant if the state refuses to obtain informed consent from parents.
Attorney Brian Morris of the Institute for Justice (IJ) told DailyMail.com: “New Jersey is among the worst. The biggest problem is that it is a black hole for which there are no regulations.’
“Attorney General Plotkin had an opportunity to make this program constitutional, but he certainly won’t.”
In December 2020, it was revealed that researchers in California had accessed newborn screening samples for criminal investigative purposes and made at least one arrest using the genetic material.
The Centers for Disease Control and Prevention in Atlanta, Georgia, in 2002 proposed a database of the DNA-filled blood spots of newborns and used them — apparently without parental consent — for additional purposes beyond the genetic screening program for babies, according to the Citizens’ Council on Healthcare.
Some states, such as South Carolina and South Dakota, destroy the bloodstains after a year or once testing is completed.
Other states that store DNA from newborns for years have rules that limit what can be done with the samples, and some, such as Alabama and Arizona, let parents refuse to retain blood.
About 29 states provide parents with screening refusal forms, including Alabama, New York and Nevada.