TRENTON, N.J.Today, a group of New Jersey parents teamed up with the Institute for Justice (IJ) to file a federal lawsuit challenging New Jerseys practice of keeping blood samples taken from newborn babies for 23 years, all without parents knowledge or consent. Not only does New Jersey hold onto the blood, it can use the blood samples in any manner it chooses.
When babies are born in New Jersey, state law requires that blood be taken from the newborns and tested for diseases such as cystic fibrosis, hormonal deficiencies, and other immunity issues. All states perform similar tests. But, after the testing is over, New Jerseys Department of Health keeps the leftover blood for 23 years. The state does not ask parents for their consent to keep their babies blood, failing to even inform parents that it will hold on to the residual blood. The only way parents could learn about such retention is by proactively looking it up on one of the third-party websites listed on the bottom of the card theyre given after the blood draw. And, once the state has the blood, it can use it however it wishes, including selling it to third parties, giving it to police without a warrant, or even selling it to the Pentagon to create a registryas previously happened in Texas.
Parents have a right to informed consent if the state wants to keep their childrens blood for decades and use it for purposes other than screening for diseases, said IJ Senior Attorney Rob Frommer. New Jerseys 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.
The plaintiffs challenging this law are two Boonton parents, Erica and Jeremiah Jedynak, and Rev. Hannah Lovaglio, a Cranbury mother of two. Its 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 childrens 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 Jerseys 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.
Its incredibly misleading for the state to tell parents they are simply drawing blood from their babies to test for diseases when it could be sold to third parties or used by other government agencies to build invasive databases or registries, said IJ Attorney Brian Morris. As Texas and other states have shown, these concerns arent hypothetical.