Parents' shock lawsuit to ban New Jersey from storing BABY BLOOD fails

A lawsuit against New Jersey's storage of baby blood has failed - as parents sued the state demanding the samples destroyed after screening.

Nearly every US-born baby has blood drawn to check their risk of about 60 rare diseases, but the New Jersey Department of Health had been storing infant DNA for 23 years and gives law enforcement and third-party researchers access.

Two parents filed a class action lawsuit in November 2023, which was settled on Thursday with a new directive that decreased 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 about a 1996 cold case being solved when police allegedly collected a baby's DNA without a warrant to investigate the child's father.

Boonton mother Erica Jedynak, one of the plaintiffs in the case, said on Thursday: 'Until the state actually asks parents for their permission before retaining their baby's blood, we'll continue to fight against this policy in court.

'Parents deserve to know what the government is doing with their children's genetic information.' 

Hannah Lovaglio, a resident of Cranbury and plaintiff, told DailyMail.com in November: 'This is a true parent right's issue. This is their body; this is their property taken from them from five years of being a minor, and the state is not required to give any justification.'

Morris told DailyMail.com that they plan to move forward with the lawsuit, especially after learning New Jersey is planning on asking the court to dismiss it due to Thursday's changes to the program.

Obviously two  years is better than 23 years, but the length of the retention is irrelevant if the state refuses to get informed consent from parents,' he said.

'The state didn’t say why it picked two  years or why it couldn’t ask for informed consent first. But until the state asks for consent first, we’ll continue to fight on.'

Genetic newborn testing started in the 1960s with the hopes of detecting diseases and conditions that could kill a child or cause severe problems -  61 illnesses and congenital disorders are tested.

Nurses fill six spots on a special filter card when administering the screening that is then sent to a lab for testing, but leftover samples are stored for the specific allowed time.

According to the state of Minnesota's website, samples are kept so that tests can be repeated, used to identify a missing or deceased child and for medical research.

While data is sparse regarding how many samples have been stored, a report states that in 2009, 13.5 billion newborn blood spots were warehoused nationwide.

Most states have been storing infant DNA since at least 2001, while California that holds samples indefinitely started in 1983. 

Morris, an attorney 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 with no regulations governing this retention.

'Nothing is preventing the New Jersey Health Department from doing anything with the samples.

'This is not just a parent issue, it is about digital privacy as well. The government can reach in and take whatever it wants, and we are trying to protect individuals from that.'

In March, the two parties had been in discussions to settle the class action lawsuit outside of a courtroom.

Attorney General Matthew J. Platkin said in a March 4 letter: 'Over the past months, the parties have engaged in settlement discussions to try to resolve this dispute in good faith. 

'Those discussions have been productive, and the parties plan to continue negotiating in the hopes of agreeing to a resolution that would ultimately obviate the need for further litigation.

Platkin announced the changes to the program Thursday, but the update still does not require the state to ask for informed consent before retaining the blood, nor does it implement safeguards for what the state can do with the samples.

The directive explained that records and bloodspots can only be obtained through a court-issued subpoena.

Law enforcement was previously able to gain access through a grand jury subpoena, a search warrant based on probable cause, or an administrative subpoena.

Platkin also noted that 'law enforcement has almost never sought to use this material as part of an investigation.'

But officers allegedly illegally obtained blood samples in 2021 to convict Brian Avis for the rape of a 10-year-old girl in 1996 and a five-year-old girl in 2003.

The samples were obtained from the card of a Avis' now 12-year-old child, leading to his arrest in 2022.

Avis was sentenced to an aggregate and is serving 17 years in New Jersey State Prison.

'There is the Fourth Amendment right that [protects people from unreasonable searches and seizures by the government] and that the Supreme Court recognizes that parents have a fundamental right to protect their children and make decisions,' said Morris.

'We are saying the state is infringing on that.'

New Jersey has a laboratory in Trenton where samples are sent for disease testing, but the warehouse in which they are stored is unknown.

The lawsuit claimed 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,' said Morris on Thursday. 

'Obviously two years is better than 23 years, but the length of the retention is irrelevant if the state refuses to get informed consent from parents. 

'Attorney General Plotkin had the chance to make this program constitutional, but this certainly does not achieve that.' 

In December 2020, it was revealed that investigators in California had sought access to 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 proposed a databank of the DNA-filled newborn blood spots in 2002 and using them—seemingly without parent consent—for additional purposes beyond the infant genetic screening program, according to the Citizens' Council on Health Care.

Some states, such as South Carolina and South Dakota, destroy the blood spots after a year or as soon as testing has been completed.

Other states that store newborn DNA for years have regulations to limit what can be done with the samples, and some, like Alabama and Arizona, let parents refuse blood retention.

Approximately 29 US states provide parents with forms to refuse to screen, including Alabama, New York and Nevada.