Genetic testing has been transformative in many areas of pediatrics, such as diagnosing rare conditions and syndromes. But in other cases, such as the processing of immigrants at the border or of children separated from families during war, genetic testing and the collection of biometric data in children can lead to an overreach of the government or law enforcement in criminal or humanitarian cases. Sara Huston, MS, Principal Investigator of the Genetics and Justice Laboratory in the Smith Child Health Outcomes, Research, and Evaluation Center, housed within Stanley Manne Children's Research Institute, is an expert in genetic testing and the legal and ethical questions that often arise with its application in medicine and law enforcement. In this episode she discusses her research and current events where genetic testing could potentially help or harm families.

Guest: Sara Huston, MS, Principal Investigator, Genetics and Justice Laboratory, Ann & Robert H. Lurie Children's Hospital of Chicago; Research Assistant Professor of Pediatrics, Northwestern University Feinberg School of Medicine

Host: Patrick C. Seed, MD, PhD, FIDSA, Attending Physician, Infectious Disease; President & Chief Research Officer, Stanley Manne Children’s Research Institute; Children’s Research Fund Chair in Basic Science; Professor of Pediatrics (Infectious Disease) and Microbiology-Immunology, Northwestern University Feinberg School of Medicine

Show Notes

  • Huston’s research broadly focuses on the ethical applications of genetic technologies in humanitarian contexts, including law enforcement, immigration, missing persons investigations, medical contexts, and even classrooms.
  • In addition to at least 15 years of research into the ethical, legal, and social implications of genetic technologies, Huston also worked in a forensic crime laboratory doing DNA analyses.
  • For the last 20 to 30 years, the FBI has operated a criminal justice database that collects DNA from criminal offenders, including people who cross the U.S. border who aren’t necessarily charged with a crime, including children. Such surveillance could have negative, long-term effects on such individuals. 
  • From 2019 through 2021, children crossing the U.S. border were given DNA tests to prove the genetic relationship between family members. As a result, children who were traveling with step-parents or other types of non-genetic relations were separated from their families. 
  • A class lawsuit settled in 2023 determined that such separations should be restricted but without clear terms. Genetic testing of all family units crossing the U.S. border still continues. 
  • About eight years ago, roughly 40 to 60 thousand family units crossed the U.S. border. Now, the average number is around 800,000.
  • Around 2018, Huston and her team at the Genetics and Justice Laboratory began researching how collected DNA data could be utilized in the reunification process for families separated at the US border. For example, Ukrainian children who have gone missing since the Russia-Ukraine war could be helped with these technologies.
  • Huston and her team have received a grant from the Northwestern University Buffett Institute for Global Affairs to collaborate with the International Commission on Missing Persons in hopes of developing protocols for working with separated families.
  • Huston points out that Ukraine is just one small example of a much larger global problem of separated families and the crisis of missing children, but it’s also an opportunity to develop new tools to reunify families, but not at the risk of exploitation.

Transcript

[00:00:00] Pat Seed, MD, PhD: This is In Pursuit, research perspectives from Ann & Robert H. Lurie Children's Hospital of Chicago. I am your host, Dr. Patrick Seed, President and Chief Research Officer of Stanley Manne Children's Research Institute, one of the nation's largest freestanding pediatric research centers. Our guest today is an expert in genetic testing and the legal and ethical questions that often arise with its application in medicine and law enforcement. At Lurie Children's, our guest leads the Genetics and Justice Laboratory in the Smith Child Health Outreach Research and Evaluation Center at Manne Research Institute. She's also Research Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. Sara Huston, welcome to the podcast.

[00:00:50] Sara Huston, MS: Thanks so much for having me, Pat.

[00:00:52] Pat Seed, MD, PhD: Absolutely. Sara, your research is really rooted in a topic that is the deep source of debate, both politically, legally, and certainly openly in the media over the past number of years. I actually would love to just open it up and ask in your words, talk a little bit about your current research focus and the context that it sits in.

[00:01:12] Sara Huston, MS: My research broadly focuses on the ethical applications of genetic technologies in humanitarian contexts, which can include law enforcement use. It includes immigration, it includes missing persons investigations, and also in medical contexts and even in classrooms. So a lot of different applications for genetic testing. And I focused my research and work on the impact on families.

[00:01:41] Pat Seed, MD, PhD: How did you decide to become a geneticist and particularly focusing on pediatrics and kids?

[00:01:47] Sara Huston, MS: So I've always loved genetics since middle school curriculum. I knew that that was something I wanted to study. And it wasn't until I was doing my master's degree that I realized I was mostly interested in the application of genetics. I was fascinated by how genetic information can be applied and used in such a broad range of applications, including diagnostics, which is where I started my journey in prenatal testing, how genetic discoveries could then be applied prenatally to determine the outcome of a pregnancy. Predictive testing in children that might develop adult syndromes and what are the problems there. And that led me to the questions of ethics and how best to apply these technologies that could be ethically questionable or where there were questions around what the proper approach might be. And that opened up a whole 15 years or more of research now in the ethical, legal, and social implications of genetic technologies. It also so happens that I worked in the early years in a forensic laboratory, doing DNA analyses for a crime laboratory. So I bring to my current research this prior understanding of how genetic technologies are applied and how the secondary uses of genetic information can be a risk in data banks of biological specimens or overreach of the government or law enforcement in working through criminal or humanitarian cases.

[00:03:25] Pat Seed, MD, PhD: Can you talk a little bit about how DNA collection and harvesting biometric data, of which genetics is one of a number of those, both how they can help and also what the harms are for kids. I don't know if there are any particular cases that illustrate the potential harm that you want to talk about as well.

[00:03:46] Sara Huston, MS: We can start by talking about law enforcement uses. For example, for the last 20 or 30 years, we have had a criminal justice database that's operated by the FBI in every state in the country that collects DNA from offenders, criminal offenders, in the hopes of solving additional crimes. That database is extremely helpful and useful in solving crimes, and over the last 20 years it has expanded. It has expanded to include misdemeanants, to include juveniles. people who cross the border that aren't necessarily charged with a crime. They just cross the border. And so we take their DNA and put it in the database. That includes children, that includes anyone who's eligible for fingerprinting, which includes children. And that's the sort of overreach that we can see or potential overreach, depending on how those databases are used that could have long-term effects on the individuals that are surveilled for criminal justice purposes over other people. So that's one aspect.

[00:04:53] Pat Seed, MD, PhD: Along those lines, though, have we seen actually the examples of where you know, some of the genetic data, particularly from kids has emerged later and had those effects that people talk about either wrongly bringing genetic data into the courtroom or places where it shouldn't be, or I think certainly a big topic ends up becoming health care and insurance related concerns because the genetics was there and it's discovered in a way that you know, health risk that shouldn't have been there in the first place.

[00:05:21] Sara Huston, MS: I don't think that there's a huge genetic information discrimination problem, given that we have the Genetic Information Nondiscrimination Act of 2008 that does restrict discrimination based on genetic data for health insurance and employment. One example of the use of genetic data or potential misuse is at the United States border. From 2019 through 2021, there was a program for testing DNA of children that were crossing with a family member to verify their genetic relationship. And if that genetic relationship did not hold up to what their claim was, then they would be separated at the border. As we know, family is a social construct, not a genetic one. Yes, many of our families are genetic. My children are genetic for me. But not all families are genetic, and certainly there's step parents, there's half siblings, there's a lot of different types of families. So we did see families being separated at the border, and oftentimes wrongfully separated just based on their genetic information.

[00:06:37] Pat Seed, MD, PhD: And what's the status now with policy and administrative changes?

[00:06:42] Sara Huston, MS: There was a class lawsuit that was settled in December 2023 based on separations that happened in the Trump administration in 2018. That settlement now restricts separations. But does not outline exactly how to restrict separations. It also requires tracking of family members as they're being separated, but does not outline how to. However, the U. S. government has apparently decided that now we should be genetic testing every family unit that comes to the U. S. border to verify their claimed relationship. So they've recently put out a request for information for how best to accomplish that. Now, put that in context, it used to be that we had something like 40,000 to 60,000 family units crossing into the United States about eight years ago. Now, it's 800,000 in this last year. This is a significant number of people that are coming to the United States. And it is a major crisis, a health crisis, a crisis of family, a crisis of community, and a crisis in safety for those families in their staying together and remaining healthy. The increase of deaths at the U. S. border is also problematic given the scale of the influx.

[00:08:04] Pat Seed, MD, PhD: Yeah, that's huge. A lot of what we're talking about here is policy. And of course we love it when policy is driven by data, and data often come from research questions. Immigrants, the border, family units, and this tracking, can you talk about some of the research in that area and how research then could, or in cases has informed the policy so that we can actually say it's data driven in different ways?

[00:08:31] Sara Huston, MS: Absolutely. We started back in 2018, 2019 when these separations were happening. We started to think about how and whether DNA data can and should be used as part of a reunification process. Fast forward to 2021 when there were still thousands of families separated since the 2018 zero tolerance policy. And we said, well, goodness, there's still a number of families. Surely there's a way to apply DNA data to try to reconnect some of these families that remain separated. So we started looking at the composition of those families as a research team at the Genetics and Justice Center. And we combed through the task force reports that the Biden administration had put out that are tracking these families and attempting to find the parents. And we wanted to understand how many of these cases are the child knows where their parent is, they're just physically separated, versus the child doesn't know where their parent is. Their parents don't know where the children are. Those are the ones that would be candidates for a DNA approach. We can't find that information because the numbers are not tracked. Not only are those numbers not tracked in the context of these families, but even more so the numbers are deceptive in the way they are tracked. Our research in the last year, we called it the accounting paper, in accounting for how best to track these families, how to understand the context of these families beyond numbers. Because as a Task Force puts out numbers, the task force says, hey, it's 3000 families. Oh, no, wait, it's 5,000. No matter what, those numbers mean something to the media that then loses the context of, wait, these 3,000, those are only the parent child. That doesn't include the families that were separated that were older siblings, younger siblings, step parent, and child. Many other combinations of families were not accounted for in those papers or in the Task force reports. So this is the type of research we do, one of the arms of research that we published last year was trying to understand these numbers and urge accountability for those separations by producing more rigorous numbers. 

[00:10:58] Pat Seed, MD, PhD: That's terrific. And you use the word "deceptive" to describe some of the tracking and the data. Is that again because of these different family units that go beyond parent-child, or what did you refer to in suggesting that those data are suspicious or misleading in some ways?

[00:11:15] Sara Huston, MS: I wouldn't say they're suspicious necessarily, but rather deceptive. They're more difficult to extrapolate what the true context is of separations at the border. And that's not because of some desire of the government to cover it up, but rather a restriction on the ability of the task force to do what their mandate is. And that's where we are making the point. Of course, the numbers matter and please do count the numbers, but don't rely only on numbers because every family separation has its own context and every one of those 5,000 families has a different dynamic. Every situation is very, very different. Context matters because every one of those children matters. 

[00:12:02] Pat Seed, MD, PhD: Let's actually talk about context then. And of course there's a massive crisis of family separation in Europe due to different circumstances in the Ukraine, that I think our audience is probably more than aware of, but, I think Al Jazeera and NPR and other sources have reported, you know, something in the range of 20,000 or more Ukrainian children that have been taken to Russia alone. Right. So there's other ways they'd be separated under these wartime circumstances. Can you talk a little bit in the conflict zone about genetics and identification and reunification and the role it's played in some of, again, the gaps and challenges there that you're seeing?

[00:12:41] Sara Huston, MS: We're really hopeful for the context in Ukraine where children have been taken from Ukraine, whether they're from orphanages or separated from their parents, or in some cases the parents sent their children to Russia in the early days of the conflict and now cannot get them back. They sent them there for safety. The numbers are difficult. Again, it's deceptive to look at the numbers because it's really unclear and almost impossible to break them down, given that most of those children are not accessible to the U. S. media or anyone on the Ukrainian side of the conflict. But the range is somewhere between 20,000 and I've seen numbers as high as 350,000 children that are displaced or missing. So if you look just at say 19,000 children, it's the current number on the Children of War website that are missing and presumably in Russia, and the families are in Ukraine or have fled Ukraine and are elsewhere in Europe, in the United States, they are not able to reach their children. They are truly missing. This scenario is the first opportunity in the globe where we could actually apply genetic data to track and assist reunifications live, as they're happening now. We have seen this sort of global conflict in the past, the children of El Salvador that were stolen and put up for adoption in the United States. Same with Chile, same with Argentina in the 1980s, 1990s. Those cases, DNA data was immensely useful, but decades later, and case by case, as a child then seeks out their parents or seeks out their grandparents to ultimately reunify. The situation in Ukraine. We don't know when those children will come forth. Some of those children are, as we speak, being reunified by assistance through the Qatari government and other mechanisms, many efforts around the globe. But many, many hundreds or thousands of those children won't surface for many, many years. But, we can now be taking DNA data from the parents and the older siblings and cousins and anyone who's missing that child, now. Protect that data for future use when those children come of age, when those children realize their predicament or are able to escape the situation. So we have this opportunity now to help those children that are covered now, and to be able to store the data long term in an intergovernmental system for safety and security so that they can be ultimately reunified as soon as possible.

[00:15:31] Pat Seed, MD, PhD: And do you or your center at Lurie Children's have a role in advising and anticipating that? 

[00:15:38] Sara Huston, MS: Yes, we do. In fact, we just got a collaboration grant from the Northwestern Buffett Institute for Global Affairs to collaborate with the International Commission on Missing Persons, to work with the allies and experts on the ground that are collecting DNA or working towards collecting DNA, working with the families of the missing to figure out the best ways to communicate this information, protect data, have data storage and protection mechanisms, consenting of families, consenting of children. These are all things that we know and have experience and expertise in how best to develop protocols. So we're working with the ICMP to develop those for these contexts and understanding the lay of the land of how this is working now and what isn't working. So even if we aren't the ones doing the DNA testing, if we understand how it's being done and we can track it, then we can look for the gaps and the barriers to be addressed in the future.

[00:16:41] Pat Seed, MD, PhD: What do you see as the next frontier for genetic testing and genetic identification?

[00:16:47] Sara Huston, MS: The fact that we're seeing this develop live in this terrible scenario and conflict is the opportunity to develop global systems because separations are happening all the time around the globe continually. Ukraine is just one small example of the global crisis of missing children. But it's the first opportunity to be able to develop the tools and systems, those tools and the systems can be applied in the United States. If we have another situation of large scale family separations, we need better protections for those data. Government protections are not enough. We have seen that the United States government doesn't always protect data and sometimes that data can be used for secondary purposes, used to exploit families. Moreover, there's the data being publicly managed can be problematic as well. So there have to be good protections and systems in place. We hope by focusing on this situation in Ukraine, that was going to assist us in developing the proper mechanisms that we need around the globe, that helps the United States at the border, that helps the families that are coming to Chicago on buses and the unaccompanied children that are coming to Chicago. There have to be better mechanisms to be able to reconnect them where possible. We know that family separation is traumatic. We know that as pediatricians at Lurie Children's, we collaborate with UCLA, Liz Barnert, who's also an expert on family reunification. We know it's traumatic. So every day a child is separated, every day there's an unaccompanied youth not connected with their genetic or non genetic relatives is a problem. So any day that we can be able to reunify them we should, and we should use what tools we can, but not at the risk of exploitation.

[00:18:46] Pat Seed, MD, PhD: Just so much to think about there. Sara, I really want to thank you for your time today. This was just fascinating.

[00:18:52] Sara Huston, MS: Thank you so much for inviting me to talk about this work.

[00:18:56] Pat Seed, MD, PhD: If you're interested to learn more about Sara Huston or Sara H. Katsanis's work and all of the activities at Lurie Children's, I invite you to visit the new online home of Manne Research at research.luriechildrens. org. For more information on Stanley Manne Children's Research Institute at Ann & Robert H. Lurie Children's Hospital of Chicago, visit our website, research.luriechildrens. org.