In the United States, nearly every newborn baby has blood drawn to check their risk for a panel of genetic diseases.
However, most parents don’t realize these DNA samples can be stored in government labs for decades or indefinitely, enabling governments to use their baby’s DNA for other uses.
Hannah Lovaglio, a New Jersey resident, learned about the practice within her state and joined a federal lawsuit against the New Jersey Department of Health for keeping DNA samples for up to 23 years.
“A 1996 cold case was solved last year after New Jersey police collected a baby’s DNA without a warrant to investigate the child’s father, grabbing the attention of some parents who are now suing state health officials over its storage practices,” Daily Mail reports.
YOUR baby's DNA is being stored for DECADES in government labs and can be used in police investigations without your permission – and New Jersey parents are now suing for rights to their infants' bloodhttps://t.co/0wLwMLySHi
— Wittgenstein (@backtolife_2023) November 10, 2023
“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,” Lovaglio told the outlet.
— Daily Mail Online (@MailOnline) November 10, 2023
Per Daily Mail:
New Jersey can store samples for up to 23 years, while others like California, Massachusetts and Maine are indefinite.
‘It is deeply concerning [that they are] preying on the helplessness of a new parent,’ said Lovaglio.
‘In your most vulnerable moment, someone is taking something from your child, and you have no idea.’
Nancy Kearney, a spokesperson for the New Jersey Department of Health, which includes the Division of Family Health Services, told DailyMail.com: ‘The New Jersey Department of Health does not comment on pending litigation.’
Genetic newborn testing started in the 1960s with the hopes of detecting diseases and conditions that could kill a child or cause severe problems.
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.
“Since the testing is mandated by the government, it’s often done without the parents’ consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center,” CNN reported in 2010.
Many parents don’t realize their baby’s DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents’ concerns are sparking a new debate about whether it’s appropriate for a baby’s genetic blueprint to be in the government’s possession.
“We were appalled when we found out,” says Brown, who’s a registered nurse. “Why do they need to store my baby’s DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance.”
New Jersey is the most recent example of parents fighting back for their parental rights.
“Parents have a right to informed consent if the state wants to keep their children’s blood for decades and use it for purposes other than screening for diseases,” Institute for Justice Senior Attorney Rob Frommer said.
“New Jersey’s policy of storing baby blood and DNA and using that genetic information however it wants is a clear violation of the Fourth Amendment rights of all New Jersey parents and their newborns,” he added.
Institute for Justice added:
The plaintiffs challenging this law are two Boonton parents, Erica and Jeremiah Jedynak, and Rev. Hannah Lovaglio, a Cranbury mother of two.
“It’s not right that the state can enter an incredibly intimate moment, the tender days of childbirth, and take something from our children which is then held on to for 23 years,” said Hannah. “The lack of consent and transparency causes me to question the intent and makes me worried for my children’s future selves.”
“As a mother, I deserve the right to decide whether or not the government takes blood from my son and holds onto it for decades past its claimed use.”
Although all 50 states and the District of Columbia require blood screening for newborns, whether a state will destroy leftover newborn blood, return it, or keep it with a form of parental consent varies on a state-by-state basis.
“What makes New Jersey’s program so uniquely disturbing is the complete lack of safeguards for future abuse and the lack of consent, which leave the program ripe for abuse,” said IJ Attorney Christie Hebert. “Parents should not have to worry if the state is going to use the blood it said it was taking from their baby to test for diseases for other, unrelated purposes.”
New Jersey is not alone in facing legal issues for the lack of consent when obtaining blood and over what the state does with the blood. Texas, Minnesota, and Michigan have all faced lawsuits over their retention of blood samples without informed consent from the parents. The 2009 lawsuit in Texas resulted in the state destroying 5.3 million blood samples, and now, all blood samples obtained after 2012 must be destroyed after two years. A 2014 settlement in the Minnesota lawsuit resulted in 1.1 million blood samples being destroyed. In 2022, Michigan agreed to destroy 3 million blood spots, but that lawsuit continues to move forward.