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Matt Katz: It's the Brian Lehrer Show on WNYC. Welcome back everybody. I'm Matt Katz filling in for Brian who has a well deserved day off. For our next segment, have you ever wondered what exactly goes on in a hospital right after a baby is born? These moments can be beautiful, exhausting, perhaps terrifying, and some human rights advocates say unethical.

In New Jersey, the Department of Health is facing a lawsuit regarding how infant blood samples may be used after a baby is born. Some human rights advocates are concerned that how the state uses newborn blood samples may violate the constitution.

Here to discuss this issue. Our Dana DiFilippo, senior reporter at the New Jersey Monitor, a new nonprofit news outlet in the Garden State that you all should check out, and CJ Griffin, an attorney at Pashman Stein Walder Hayden, and director of the Firm's Justice Gary S. Stein Public Interest Center. Dana and CJ, thanks for joining me and welcome to WNYC.

Dana DiFilippo: Thank you for having us.

CJ Griffin: Thank you.

Matt Katz: Dana, you've been reporting on this issue in New Jersey, but it's really a national issue in scope. Could you just begin by explaining what this is all about? What goes on in a hospital after a baby is born and what happens in that moment that has civil liberties advocates so concerned?

Dana DiFilippo: Sure. Anybody who's ever had a child knows what a crazy time that is. Obviously, even if you don't have a child, you probably can imagine, but anyway, one of the things that hospitals do is test for a number of genetic diseases. They do that by pricking the heel of a newborn baby usually within 24 to 48 hours of the birth. Every hospital does this, every state has a program like this. Most of the programs, if not all of them are mandatory. They supposedly ask you for your consent. I had two kids. I don't remember that, but it's such a crazy chaotic time.

Matt Katz: Sure. You sign a lot of things. You probably sign something.

Dana DiFilippo: Right. Every state does that. New Jersey's been doing it since 1977, but what a lot of parents probably few parents, if any know, is that these states then keep those blood samples and they call them blood spots because they put them on the paper and it's literally a spot of blood. Anyway, they keep those blood spots for varying lengths of times. It depends on what state that you live in, depending on how long. In New Jersey, it's 23 years. They store them and then they do other things with them. That also depends on what state you're in.

In some states, they do medical research on them and other states, they might use them for-- like Michigan, for example, one of the ways they use it is for crime victim identification. If they have a body and they have no idea who it is maybe they would go to these blood spots to see if they can find a genetic match.

The problem it rises is that when you're in this fog of childbirth that you don't know that. You don't know that they're storing this blood work, that you don't know that they're using it or all the ways they could be using it. That's really where the concerns arise.

Matt Katz: Then one of the ways they could use it is to solve a crime. Advocates became concerned after an infant's DNA was used to incriminate the child's father. Dana, can you explain that story for us?

Dana DiFilippo: Sure. This came out of a case by the New Jersey State Police. It was something that the state Office of the Public Defender discovered in defending someone that the state police had used one of these blood spots to link someone to a 1996 sexual assault. They were like, "Hey, wait a minute," because the way this kind of crime investigation should work is that they should develop probable cause, and then they should seek DNA evidence that way, a DNA matched directly or DNA evidence directly from whoever they suspect.

In this case, they used the blood spot to link the guy to this crime and that's a concern because this crime happened back in 1996. The child in question wasn't even born then. He's nine now. It's just a use that parents who have kids and would normally consent to this kind of health testing who doesn't want to know if your child is healthy or not, but you if you then find out, oh, well, they also might in 10, 15 years use that to get you for a crime, that's something that I think has raised a lot of hackles among civil rights people, but also should among anyone.

Matt Katz: It's really wild. Listeners, are there any parents out there who want to weigh in about this? Have you thought about how your child's DNA could be used and stored by the government? Let us know what you think about the issue. Give us a call 212-433 WNYC, 212-433-9692. If you have any questions about DNA privacy, we can float those to our guests as well. 212-433 WNYC or tweet @BrianLehrer.

CJ, you've now sued over this. You're a prominent attorney in the state. Tell me about your case.

CJ Griffin: Sure. We are representing Dana's organization, New Jersey Monitor, as well as the Office of Public Defender in a public records lawsuit, seeking to learn more about the scope of this use by law enforcement agencies without the consent or knowledge of parents. Both the Monitor, as well as the Office of Public Defender filed records requests with the newborn screening laboratory, simply asking for the number of subpoenas that they have received from law enforcement agencies over the past five years or so.

The goal is not to learn about any specific case at this point or to identify any particular investigations, but rather just to learn how expansive this use has been going on and which agencies are doing it both because we think the public has a right to know, but also because the public defender's office wants to better defend their clients.

Unfortunately, despite both of these clients telling the screening lab that they didn't need to produce the actual subpoenas, that they could instead just tell them how many subpoenas there are, or that they could completely redact all identifying information from the subpoenas, the newborn lab still denied access to them. There's just this complete secrecy around this use by law enforcement and it's very troubling. We sued. The case is currently pending. We're hoping for a decision in October at this point.

Matt Katz: What is the state's argument that this is private information that once you literally give us your baby's blood, we don't have to tell you what we're doing with it or how we're using it?

CJ Griffin: The basis for the denial was that these are grand jury records and grand juries are shrouded in complete secrecy. That's unfortunately, in our opinion, not true. They cited the court rules surrounding grand jury secrecy, which really just apply to grand jurors and prosecutors and court staff and transcribers and that sort of people in the proceeding, but it expressly doesn't apply to witnesses. I'm sure as reporters, both of you have spoken with many witnesses or recipients of grand jury subpoenas and they can freely speak to the press, and you can Google and find a gazillion stories about grand jury subpoenas and grand jury testimony as a result.

It doesn't prohibit the state lab from giving us the subpoenas, and it certainly doesn't prohibit them from telling us how many they received or giving them to us with redaction so that we don't know who's the target of the investigation or that sort of thing.

Matt Katz: CJ, you know what the laws are in other states, in New York. Is New Jersey different in terms of the way they hold this blood, and then also the lack of information they provide about it?

CJ Griffin: I haven't done expansive research on that, but, first of all, say, as a parent, I knew nothing about this program and it's not required in our statute for parents to actually have informed consent. Some parents might be notified and some may not. I learned about this even though I'm a parent for the first time when I started working on this case, but there are states with varying records retention schedules and varying allowable uses.

Virginia's Department of Health website says that they will not allow the blood to be used for anything other than the health purpose that it's intended to be used for, and that they only store it for six months. Texas's website tells you exactly how it could be used and that they will destroy it after two years, unless you voluntarily opt in for a longer retention schedule. I didn't see anything at all about retention of these samples on the New Jersey Department of Health's website. I instead had to do all this legal research to try to figure out what the retention schedule was and in some obscure public records retention schedule I found that it was 23 years. I think that's problematic and rather shocking.

Then I question the legality of law enforcement using the newborn lab. The statute that creates this program says that the blood samples can be used by the department of health and agencies designated for the purpose of carrying out the program. Then it says that the samples are otherwise confidential and should not be divulged or made public in any way that would disclose the identity of any other person. It's problematic. I think we need to hear more from the state as to how this program law enforcement use is allowable and perhaps we'll hear that in defense of this lawsuit that we filed.

Matt Katz: It's the Brian Lehrer Show on WNYC. I'm WNYC reporter, Matt Katz, filling it for Brian today. If you're just joining us and wondering what in the world we're talking about. My guests are Dana Difilippo, senior reporter at the New Jersey monitor and CJ Griffin, an attorney at Pashman Stein Walder Hayden. We're talking about how newborn health screenings that collect infants blood can apparently be used in police investigations in New Jersey. We're talking about the implications of that for privacy and civil liberties.

Dana, you reported that a similar case in Michigan could have implications for this practice in New Jersey. What's the case there and what does that mean for folks in New Jersey?

Dana DiFilippo: Sure. There's a civil rights attorney there by the name of Philip Ellison. He actually discovered this as a parent. His wife had a baby in 2017 and they're in the hospital and it's crazy. They said, "Can you sign this form for the blood work?" He's like, "I've already signed forms I'm not sure. You're coming to me every 15 minutes and I've signed 100,000 forms." They're like, 'Oh no, this isn't for us. This is for the state of Michigan." He's a civil rights attorney. He is like, 'Excuse me." That's how it started.

He started by fighting his own battle to protect the privacy of his son's DNA. A few months after his son was born in the fall of 2017, he filed a case there challenging this. He's had a number of other parents sign on to it. He has state and federal lawsuits going. The state lawsuit is on hold pending the federal case. He had asked for his son's blood spots to be removed from storage and any use for whatever they want to use it for and because that's the state case that was stayed that's kind of on hold.

His son's now four and he still has no idea whether the state still has his son's blood spots and how they may have been used in that time. It's a little bit of a crazy case. He has a number of objections that he's voiced kind of in the lawsuit when I talk to him about it. There's any number of civil rights that are in question here. One is the right to privacy. When you give blood for a specific purpose. Another right is the right to bodily autonomy. When you give blood for a specific purpose it's problematic then if it would be used for anything beyond what you thought it was being used for.

Then here in New Jersey, the civil rights issue in question is the right to be free of warrantless search and seizure. There's a number of kind of things going on here and reasons why people are concerned.

Matt Katz: We actually have a caller with yet another concern. Mohamed in Nassau county. Hey there, Mohamed, thanks for calling in.

Mohamed: Yes. Thank you, sir.

Matt Katz: What's your concern here?

Mohamed: I have a child that was born in Michigan in 2020 and my concern is that can the US-- Should I be concerned about the US using it for counter terrorism purposes, given the fact that I, myself have been profiled by every federal agency in the US. Should I be concerned about the American government terrorism towards our community.

Can they use the DNA and the blood samples to go after our children, given the fact that some of our children have been targeted by drones whether in Yemen or in Afghanistan, I'm talking about American citizens. That's my concern, whether we should be worried about US government to use the blood samples and go after our children.

Matt Katz: Thank you, Mohamed. I appreciate that question. CJ, what do you think about that? I guess any community that has felt that they've been historically targeted by the government and law enforcement, like the Muslim community in America is probably pretty is probably more concerned about this kind of thing than others.

CJ Griffin: Yes, absolutely. A variety of communities should be concerned. Actually, I think all of us should be concerned, but the problem with many of these statutes and these programs is that there aren't constitutional safeguards built into them. In New Jersey statute, although it does say that they should only be used for the health screening purpose, evidently the newborn screening lab is just responding to simple subpoenas by a law enforcement agency and not even requiring a court order or a search warrant.

We need those safeguards in place. We need legislatures to define exactly what the use can be to require informed consent, both for the blood draw, as well as the retention to allow parents to opt out of the retention if they so desire or to be able to demand destruction of the blood sample. A simple transparency and constitutional safeguards here are very important. We don't know the scope of this problem, which is why we're we filed our lawsuit in New Jersey. I think once we have some more information, then there'll be additional demands for legislative change.

Matt Katz: CJ, can you explain the role of the fourth amendment here? The New Jersey public defender alleges that New Jersey's use of infant blood samples breaches the fourth amendment of the constitution. Can you explain that argument?

CJ Griffin: Yes, sure. The fourth amendment protects people from unreasonable search and seizures. Generally to obtain a DNA sample from someone, the law enforcement agencies would have to develop probable cause and go to a judge and present that information. A judge would have to sign a search warrant to collect a DNA sample.

Here they're sort of skirting that. They're using public databases that collect DNA and investigative genetic research companies to use those databases to run samples through, to try to narrow down at least to a family. In this case, they narrowed it down to a family and could identify that the sample would've belonged to one of the children of this couple or one of the children's offsprings. Then they use that data that they obtained from these public genetic databases to then just serve a simple grand jury subpoena upon the newborn lab. The newborn lab, evidently voluntarily produced it without questioning that process in any way.

Then once they alleged that they had some sort of match there, then they use that information to then go to the judge and say, "Hey, based on all this information, we now have probable cause." They didn't initially have probable cause. They use these other outside sources and then argue that they had it. That's extremely problematic and we believe violates the fourth amendment and the New Jersey constitution.

Matt Katz: Dana, in you're reporting, you also mentioned other states where law enforcement has come under pressure for using and storing just DNA unethically as California here in New York. Can you discuss a couple of those situations that don't necessarily involve blood per se but DNA?

Dana DiFilippo: Sure. Texas, for example well this is blood but Texas used the blood spots. This was about 10, 15 years ago to create a DNA database for crime fighting, crime investigation purposes, that was challenged and they lost because again this creeping use of these blood spots for things that they weren't authorized for Michigan uses them for crime fighting in terms of not really crime fighting, but crime investigation if they have missing people. Beyond crime fighting, there's another concern that in Michigan, for example some of these blood spots the state sells them to for-profit companies for research.

When you're asking parents or trying to get informed consent from parents on these things, it's one thing to say, "Hey, can we take your child's blood to test for disease," but then when you start saying things like, "Well, can we also take it to research medical diseases in our whole community. Can we sell it to Johnson & Johnson so they can do research on it? Can we keep it so that 10 years down the line, it might be able to help us as we investigate crimes? That's really where the problems come in.

The secrecy is key here because in most of these states, they're so secretive about it, you don't know how they're using it. That's really the problem here. If they didn't have anything to hide, then they should tell us how they're using these spots and in all of these states where there have been challenges, that's why there were challenges because they weren't being transparent about it. People had to sue to find out what was happening.

Moderator: Are there suits in those other states, CJ?

Dana DiFilippo: There have been, yes.

Moderator: Could that affect what happens in New Jersey or is that just a every state is in lieu of any federal rule or regulation on this, every state makes their own decisions, I guess, right?

Dana DiFilippo: Yes, CJ?

Moderator: CJ, you're-

[crosstalk]

CJ Griffin: I think what happens in other states can be informative and certainly it was informative in our research for this case. I don't know that it would legally impact what happens in New Jersey unless there were some federal claim that was under the federal constitution that was ultimately decided by the US Supreme Court. I'm not sure if they have those claims.

I think what's extra problematic here is really since this is a mandatory program, the state has no obligation to tell you that they're collecting the blood. If you somehow are told or you otherwise know, you have no ability to opt out of it unless you can prove that you have a religious reason for doing so. Once they take the blood, you have no ability to say that they can't keep it for 23 years. I have a 13-year-old son, evidently his blood will be stored for 10 more years and to me, that's deeply problematic. I think it would be for many parents.

Moderator: It's a credible story. I really appreciate both of you bringing this to light and bringing the story to us. My guests have been Dana DiFilippo, senior reporter at The New Jersey Monitor, and CJ Griffin, an attorney at Pashman Stein Walder Hayden and director of the firm's Justice Gary S. Stein Public Interest Center. Dana and CJ, thank you so much. We'll be following your reporting on this case.

Dana DiFilippo: Thank you.

CJ Griffin: Thank you.

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