Unfortunately this story comes a week too late for Halloween season vampire jokes, but the State of New Jersey keeps your baby’s blood without your permission for 23 years.
Today, a group of New Jersey parents teamed up with the Institute for Justice (IJ) to file a federal lawsuit challenging New Jersey’s 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 Jersey’s 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 they’re 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 registry—as previously happened in Texas.
“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,” said IJ Senior Attorney Rob Frommer. “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.”
Pretty much every state does blood testing for newborns to screen for genetic disorders, but as far as I can tell, only New Jersey keeps it around for whatever they damn well please, be it criminal, commercial, or secret clone armies.
What could possibly go wrong?
You might think that government agents would need a warrant to obtain your blood, but Maryland vs. King holds that obtaining DNA from arrested suspects is akin to fingerprinting and thus not a Fourth Amendment violation. But obtaining and keeping DNA from every single baby born in your state would seem a giant Fourth Amendment violation. Especially since at least four New Jersey police departments have used the baby DNA for criminal investigations.
“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.
“It’s 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 aren’t hypothetical.”
Neither you, nor your children, nor their blood, are the property of the state, and this New Jersey law deserves to go down hard.
(Hat tip: Steve Lehto.)
Tags: Christie Hebert, DNA, Fourth Amendment, Institute for Justice, Maryland vs. King, Michigan, New Jersey, Regulation, Rob Frommer, Supreme Court, Texas
Michigan case similarly decided at the end of July:
https://www.abc12.com/news/judge-rules-portion-of-states-newborn-blood-screening-program-violated-rights-of-children/article_3a38acb2-2fe6-11ee-bc45-dbd0b5dc6214.html
“SAGINAW COUNTY, Mich. (WJRT) A judge has once again found key parts of Michigan’s newborn blood-testing program unconstitutional.
It’s a case that we first told you about in 2018 as a lawsuit was brought by four Mid-Michigan parents.
They raised concerns about how leftover samples are used after screening for rare diseases and this ruling is likely to have an impact on how the state stores millions of blood samples and makes them available for research.
This new ruling by U.S. District Court Judge Thomas Ludington says that the Fourth Amendment rights of nine children were violated.
Under the Newborn Screening Program, the state of Michigan collects samples of newborn babies’ blood and tests it for various medical conditions. What happens to those blood samples after the testing is the focus of his decision.
Michigan must have permission from parents to use spots for outside research. But attorney Phil Ellison has argued the request for consent was “misleading, it was incomplete and didn’t have all the details.”
Ellison says those blood samples are stored at the Michigan Neonatal Biobank in Detroit, which then sells them for research and lets law enforcement get access to them, which many parents don’t realize.
Ludington in the past has ruled the constitutional rights of the four parents named in the lawsuit were violated, and now he is says the children’s rights were violated as well.
The judge wants the state to give the plaintiff’s options, which include returning the infants’ blood samples and data or destroying their blood samples and data.
Ellison said Ludington “got the decision absolutely correct and this restores the right to make decisions about children back into the hands of moms and dads.”
The Michigan Department of Health and Human Services could appeal this ruling and they were looking into what was next for this newborn baby screening program, but they did not release a response Monday.”
[…] THEY CAN’T HAVE IT: New Jersey Wants Your Baby’s Blood. “Pretty much every state does blood testing for newborns to screen for genetic disorders, but […]
Sounds like someone resourceful should find out where that storage location is and tell everyone. Then maybe it loses power or has a fire or something. Who knows.
Look… Much as I’d like to agree with all y’all about this being a bad thing, I am going to have to disagree.
I do not see a major flaw in being able to identify people that commit crimes. If you know, for example, that your DNA is on file somewhere and they’ll be able to identify you as the responsible party for a rape, I think that has certain… Dissuasive value.
As well, this crap is only going to get more and more of what it is. It won’t be too damn long before they’re using DNA identification kits that turn out nearly 100% accurate renditions of your facial features and other things.
And, while I feel for the “lost civil liberties” aspect of it, realistically? That crap was going away, and maybe it should be. Just like the “right to privacy” online… Maybe you should be held responsible for all that kiddie porn you went out looking for, and maybe the “right to privacy” should not exist in that regard.
I think we’re reaching a point where trying to maintain privacy and secrecy is a lost cause, and as such, maybe we ought to be thinking about how to deal with that. Is it such a bad thing that criminals might be instantly identifiable? That you might have to behave, lest you be held accountable for those things you’ve done online?
Presumption of innocence is great, but the practical reality is that they’re going to be sequencing DNA so much and so often that you’re going to wind up in a dozen different databases, most of which will be commercial. It will be inevitable, and maybe we ought to be focusing on how we deal with this, rather than trying to ban it entirely?
I, for one, don’t think it’s a bad thing that someone committing a crime of violence like rape might be instantly identifiable. I rather like the idea, to be honest… Provided there are some damn safeguards.
Seriously, though… There will be things like the Star Trek tricorder in relatively short order that will be capable of churning out an Identikit image of what you look like from a DNA sample. Probably be happening in my lifetime, too, so try and figure out how to deal with that sort of ubiquitous capability now, before you have to deal with it after the fact.
Yeah I’m not buying it @Kirk. I approach this crap the same way I approach the cloud or my biometric data. Brute force can they get whatever info they want about me? Sure. Do I have to make it easy for them? Hell no.
Nothing about American govt at any level has proven trustworthy in the last 15 years. No one should give them the time of day even if they asked nicely, much less letting them have any child’s helix, much less my own child’s.
@D Liddle,
You don’t have to buy anything. You’re barking up the wrong damn tree, with what you’re thinking.
News flash, for you: You are constantly shedding cells and other DNA-bearing material. You can’t help it; nobody can. At some point, they’re going to be able to sequence your DNA in real time, as your poop goes flowing by the sensors in the sewer system. At some point, they’re going to be tracking you by the skin cells you slough off as you handle products in the supermarket, and the reality is, there’s not a damn thing you or I can do about it.
I don’t particularly care for it, but the sad fact is that privacy, secrecy, and anonymity are all things we only had for a short flow of time, in between living in hunter-gatherer bands and now. That’s an eye-blink of history, when you think about it. Sure, time was you could get on feet and walk far enough away to escape your issues with your people, but… That was only an aspect of it. To live with any close communal group? There was no privacy, no secrecy; everyone knew everyone else’s business, and just made a point of looking the other way.
Quick question for you: Just what the hell do you think was going on in all those one-room log cabins across the frontier, back in the day? D’ya suppose they sent the kiddies outside, while Mom and Dad did their thing? Or, was it just an unspoken fact of life? How about with the old days in the long houses across Northern Europe? Was there privacy, in those? Did the rest of the village not know what went on, or did they just make a point of not mentioning it?
Modern life is returning us to our roots, where it was damned hard not to have your entire life up for observation. Only difference is the damn scale, these days… Once, it was maybe 12-25 other people who’d know your “shame”, but now, it’s the whole damn world. Potentially.
I get your point about the untrustworthiness of government, but the majority of this crap won’t even be governmental… It’ll be your own doctor, your own pharmacist, your own family members doing genealogy. It’ll be random DNA sweeps that just vacuum up all those hair follicles and cells you shed on the way to work…
Sad but true fact: Privacy and all the rest? DOA.
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I wonder how much the state spends on storing these samples.
And how many rape kits do they have a backlog in analyzing?
Know them by their priorities.