As the Trump administration’s “zero tolerance” immigration policy unfolded in Spring-Summer 2018, so too did a barrage of stories around migrant children being separated from their parents, and then mandates to re-unify them by judge-ordered deadlines. Atop the chaos were calls for DNA testing to screen migrants for trafficking, offers from genomics companies to donate tests and reagents, and the announcement of DNA as a tool to reunify families.
As legislators, civil liberties advocates, geneticists, ethicists, and attorneys got involved, the media sprang into action to translate for the public the convoluted history of the use of DNA in immigration.
Various tests were confused: consumer genomic services vs. commercial relationship testing services vs. forensic DNA laboratories.
In this interview, Sara Katsanis and Jen Wagner discuss how they hope to inform future policy discussions through research they’ve collected regarding what media reports on using DNA at the border. They also touch on common misconceptions the public may have regarding DNA and call on the forensic community to help correct those misunderstandings.
Transcript:
Laura: Hi, we’re here at ISHI 29 with Sara Katsanis and Jen Wagner. Why don’t you guys introduce yourselves and tell me a little bit about your work?
Sara: I’m Sara Katsansis. I’m an instructor at Duke University, and I study Genetics Policy and how genetics is used in situations like law enforcement and human rights and humanitarian applications.
Jen: I’m Jen Wagner. I’m an Associate Director of Bioethics Research and Assistant Professor at Geisinger Health System. So, my work historically has all been all things DNA and law and policy, with human rights interest really at the heart of everything.
Laura: Excellent! You guys both presented here at ISHI 29, can you tell us a little bit about what you were talking about?
Sara: So, this summer, there was a lot of news coverage and a lot of conversations around Trump’s Zero Tolerance Policy that was enacted in April, which escalated, so that by June, there was some public outcry. Some, being an understatement, maybe. There was anger among the public. There was anger among the community, and a call for the use of DNA. Jen and I, at that time, connected, because we worked together on a lot of different projects over the years. We connected and said, “lets write an op-ed around why aren’t we taking DNA instead of children.” We should be able to keep families together, and as balances go, it’s better to take DNA, in our perspective, and a privacy risk and all of these concerns than it is to harm the children by removing them from people that they know, whether they’re biologically related or not.
So we wrote that op-ed, and then things escalated from there to where the Zero Tolerance Policy was rolled back and families, or at least parents were no longer separated from children, but by that time, there were already a lot of kids displaced from their families, and DNA was again called upon for re-unification.
Then, that was rejected, but the administration was then using it anyway, or at least they announced that they were using it anyway, but with little transparency, and little understanding, and little release of information to the public, leaving Jen and I, who are experts in immigration and genetics and applications of DNA, talking to the media continuously, talking to policy makers, and trying to clarify things… Try to correct misunderstandings. Fill in some of the back story and the precedent for how DNA is used. Explain the difference between STRs and Ancestry.com, and all of these issues. And we were just pulling our hair out, because we didn’t have all the answers either, and we had to speculate ourselves around what was being done, what the legal authority was to do it, what the ethical protections were, who has access to this information…
So, midway through this process, we said, “you know what? We should talk about this at ISHI.” We need to have this as a conversation. At least as a touchstone, because by the end of the summer, by the end of July, there was so much anger and DNA, we felt, came out as a negative among the public, and that’s what we wanted to bring.
Jen: Right, so we, earlier today, talked about some preliminary research that we had done to actually, take the media coverage about this situation over the summer and try to make sense of it, right? So, we analyzed the content of the articles that we were able to find, as well as tweets, so the Twitter discussion, to try to get the details, if there were any, to try to make sense of what was there to try to inform future policy discussions and the like. So that’s what we presented, and hopefully it was helpful.
Laura: No, I think that’s fantastic, and I know you both wrote a blog for ISHI, which we really appreciated, which talked about misconceptions, because I think there are so many in the public. Because this is a public video and people will be watching who maybe don’t understand everything that’s been said about it… I know there’s been confusion 23andMe, My Heritage, and a number of commercial sites offering kits for DNA testing, I don’t know if the public understands why that might or might not be a good idea, how many other issues affect that… Maybe we can talk a bit about those misconceptions.
Sara: We don’t know what the public understands or doesn’t understand either, and we’re cautious to make assumptions about what they understand or don’t understand, because we’re researchers, we’re social scientist researchers, and we would do that in a formal way. So, what we can do, and what we did try to do in the last couple of months is to pull the news sources, pull the tweets, and chronicle this is what we see as a conversation where the misconceptions may lie. We’re not entirely there. It’s been two months, so we did our best to pull the data, and to look at some trends, and to start to see some of the slant of the media. The slant of the tweets. Where the conversations were centered around, and that’s where we are now. We presented that, and we, over the next few months, we’ll break that down further to mark where the misconceptions lie – what’s truth and what isn’t truth, where is there lack of information, and that stems more questions, more misconceptions.
Jen: Right, and I think one of the things that’s important for us is recognizing how all of this ties together, right, so the understanding of what’s being done in a forensic setting, or in this border setting, is going to effect people’s willingness to participate in medical genetics research. You know, so it’s not just confined to the forensics community. So, understanding what is happening, and then try to communicate to that public so we can have an informed discussion about what their concerns are, what their understanding is, is really important to us. I think you asked what were our…
Laura: How much data? It seems like there could be unending amounts.
Jen: Yeah, right. So, we started with doing a check on the five major daily US newspapers from this entire time period. So, from June 1st to July 1st is really when this was taking place. We started there, and what was interesting, or what I thought was interesting, was that there was a complete lack of conversation about the genetic aspect of this. There was nothing. So, then we dug a little deeper and we used two other databases to actually look at a wider range of news sources, and I think we ended up with 70 articles that we then coded and did content analysis on as you mentioned on the… Is this a neutral article, or is this pro or anti-immigration, pro or anti-zero tolerance policy, and then pro or anti-DNA testing, was just the preliminary check that we wanted to do, and we were able to finish that before this conference, but what we need to do is going into an in-depth analysis of, ok, we know which articles had a lot of discussion about those issues, and now we need to see, did they hit the mark. Were they talking about relevant information, because one of the aspects I’m interested in is looking at the legal authority for what was being done, and we can’t say whether the government crossed the line or not, because we still don’t know what statute or regulation they were relying upon to give them the authority to do whatever it is that they did. The details are still missing, so we’d like to go in and see what’s being talked about in terms of the perception of whoever’s talking to the reporters, just to talk about what’s relevant and what’s not.
The Flores settlement has been discussed over and over in the articles, and what’s interesting about that is that the settlement agreement itself did not talk about DNA testing at all. It certainly didn’t mandate DNA testing. What it did was it talked about the protections that need to be in place for children. Taking the best interest of the children into account. And the actual length of time that children could be detained. And so trying to unpack all of these issues is going to be an important part of our research here.
Sara: Our interest, at least right now, is less so with what the public misunderstands than with what the experts misunderstand. We did our best to inform the media that contacted us, but not all the media contacts us. We’re not everyone. So, the media contacts a lot of other people too. A lot of those people had partial information. So, it’s not that they were feeding wrong information to the reporters, but it was partially informed, and that’s where we hope that highlighting that won’t just call out our colleagues, but will say ok, we need more of a discussion, we need less reliance on people that are partially informed, but thoughtful scholars, and more involvement from the forensic community as well to say, “I know what they’re doing. I know how long it takes to do it. I know how much it costs. I know who has authority for oversight of this kind of testing.” This is where we wanted to make a statement here at ISHI to say, forensic community, it’s on you too. It’s not just on us, the people that think about these topics all the time. It’s also on you to take some ownership and information the public.
Laura: And what would you like that discussion to look like, or at what points should it include based on what you’ve seen so far? It’s a big question.
Jen: It is a big question!
Laura: Maybe it’s too big. Where do you see the trending going so far?
Sara: It’s a difficult question to answer, because I’m not in their shoes, and I think that the forensic community – there’s the private sector, there’s instrumentation people, there’s people selling reagents, and then there’s law enforcement and the people who serve law enforcement, and there’s the government laboratories, and a lot of people feel like they’re unable to make a statement with authority, because maybe they’re low on the chain. They want to leave it to the higher and higher levels to make a statement, but they’re the ones that know truth, and with our increasing dialogue of social media and Twitter, where this information is just being pushed out there, it would be great to have some sane information that is cohesive and accurate, and not just noise and speculation.
Jen: Right, and it doesn’t have to get to the actual policy decision, right? A lot of the frustrations that we had are the conversations are being made in a vacuum. Right? What is actually feasible? What is a reasonable expectation for what could be done in a two week timeframe or a one week timeframe, or what information really needs to be had and who needs to have access to it in order to move forward. So, I think it’s always a challenge when you’re talking and not speaking on behalf of the institution that’s your employer. So, we speak on our own behalf, not anyone else’s behalf, but…
Sara: I don’t speak for Duke!
Jen: Right, views are my own and all that goes with that, but I think that it is important for us to have members of the forensics community speaking about the actual operations and the practical aspects, so that people who do think about the other issues are able to weigh in and say, “Well, if this is the situation, maybe we should think about option A vs option B, and the like, and unfortunately, this summer, we didn’t really have much of that, and we’re still waiting on details.
Sara: We noticed, and we haven’t found this in our data yet, but we noticed (anecdotally) through Twitter feeds and the news, that we were seeing some of them going against each other. This is a private sector company – we can help. No, we’re a different kind of private sector company – we can help more and better, and I feel like that dialogue doesn’t help the public understand what is truth. What is important to these kids and how best to go about it, regardless of who has authority, and nobody has authority. This is an unprecedented territory. There’s never been a situation in the United States where families were pulled apart to separate regions and then DNA tested. There’s no precedent for that!
Maybe Japanese-Americans was the last time when we had this scenario. So, this was new. Nobody knew what to do. Lots of people wanted to help, and pitting DNA forensics against DNA forensics… that’s not a positive message.
Laura: It’s beautiful how passionate you both are, and how did come together independently to work on this?
Sara: Well, we’ve been working together for many years on issues around DNA and human rights. I think, early on, it was DNA and human trafficking. We collaborated on a project where a group was taking samples from sex workers and keeping them for safe keeping, and we had a study to talk with the sex workers. We held focus groups with these groups of women in Texas to ask them their thoughts, because we had heard that they wanted to do that, and we said, “Well, let’s us go in, as researchers on the outside, social scientists, and get information directly from them.” So that was one of our first projects together, but since then we’ve had a lot of overlapping interest with immigration and Priority Three Program.
Jen: And law enforcement, and the science side. So, one of the projects that we worked on together was just recognizing this important question that the courts were facing, right? Which is about DNA fingerprinting as an arrest booking procedure. The articles that we knew they were looking for – they had a very clear question – and those articles, that’s not how scientists typically write their articles and investigate a question. So, I talked with Sara, and said there’s this need to study this question and see what does the literature say? What is the state of science in terms of the markers that are used in CODIS, and the information that we can glean from them? So we did this project, this paper, and it ended up being pretty important in terms of the court’s understanding of what was happening. So, we tend to have…
Sara: In that particular topic, the paper was around the phenotypic usefulness around the 20 STRs that are used today, and we found that, at that time, there was no phenotypic value in the genotypes from the STRs. Not to say that there wouldn’t ever be, and that was our conclusion. To say there isn’t now. Maybe one day, but not right now. That was a very useful conclusion, I think, and it ended up being cited at the Supreme Court during Maryland v. King, and we both attended that together, because we both had followed the Maryland v. King very closely, because she was actually on the opposite side of me in the thoughts and opinions, where I did not want arrestee samples to be collected and retained, and she thought it was fine.
Jen: That’s a little bit of a simplification.
Sara: But we’ve always had some very strong debates and conversations, and slightly different perspective, but with the same mind of protection of people and vulnerability of people, but access to science and technology to the broadest utility and benefit of humans.
Laura: I might guess that leads to a healthy outcome and back and forth.
Sara: Yeah, it does. And great brainstorming.
Laura: How do you find time for all of this?
Sara: Well, one of our slides that we put up today has our text exchange, and I texted her, “why aren’t we taking DNA instead of children away? Should we write an op-ed dually titled?” And she texted back at 3 in the morning, “yes, and we’ll make time.” And I said, “coffee first, and let’s talk.” So, we just make the time.
Jen: That’s right. A lot of this happened while we… We very rarely take vacation, or I rarely take vacation, you go once a year.
Sara: I go in the summer.
Jen: So yours is at least confined, but I was taking a long weekend for my birthday, and of course, that’s when all of this hit it’s escalated moment, so we tag-teamed.
Sara: You talked to the media. You do this one, I’ll do that one.
Jen: And of course you end up taking the phone calls while you’re on vacation, because you have to. When you’re needed, it’s in that moment, and that’s what you do. It’s been great working with Sara, and I love working with Sara.
Sara: Yeah, my favorite thing to do is to collaborate with her, because she’s the lawyer and the logic behind my passion. So, she can correct me and say, “Well, technically…” Oh, well, ok.
Laura: So what’s next for you guys?
Sara: Well, I just got a grant from the NIH to study genomics, biometrics, and identity, which is a loose term for immigration and how genomics is used in immigration, the context that we talked about today, also with the missing migrants, and how DNA is used to identify people who cross the border and go un-identified, and also ancestry – use of ancestry at the borders to make claims of where they’re coming from. So, all those things are on the docket for the next three years, and she’s one of my consultants along with many other forensic scientists, and people outside of forensics as well.
Jen: Yeah, and I’ll just add to that and say that some of the other aspects of the research that I’m doing, in addition to what Sara has been saying, focus on these conditions of genetic exceptionalism and genetic determinism and how they influence the attitudes about public policy positions, so that’s an interest of mine, including these notions of non-traditional health data sources. So, if we live in this world where everything is potentially informative in some way, how can we do that in a way that’s going to align with people’s interests and their concerns about who has access and what they’re doing with this information and the like. So, my work continues to span this space of the forensics and the consumers and DNA and the health-related aspects as well.
Laura: Very interesting. And I love that you’re talking to people about it, so that it gets out there in the media so that anybody can read about it and learn more. I think that helps to educate people, beyond the groups that are working on the problems, so that they can advocate for what they believe in. Final question, what brought you to ISHI? Why was it important to present this year?
Sara: Well, I really think it’s on the forensics community to have a stake – to be informed for one – but to have a stake in the conversation, so we really wanted to motivate the ISHI attendees to be empowered to talk about DNA and correct misunderstandings, but in a civil manner, in a way that is not necessarily through scary tweets that are slanted one way or another. Everyone comes to the table, I think, in the forensics community with a bias, and opinions and thoughts, and wherever those are, we all (most of us) still want family to stay together and we want children to be respected and cared for. So, with that notion, I hope that people are empowered to add to the conversation in a positive way.
Jen: I’ll echo what she said, but just really, I think, one of the things that’s important for me and my research is always taking it to the audience that needs to hear it. So, if that brings me to ISHI, that brings me to ISHI. If that brings me to another organization, so be it. Last week, I was doing a continuing legal ed class for attorneys. So, it’s just whatever audience needs to hear that message or to learn about what’s happened, and these are issues that matter to all of us. Whether you’re in law enforcement or forensics, or not, so I’m sure we’ll talk about it in other circles too.
Sara: Next year, the American Society of Human Genetics will be holding a meeting, and we hope to bring some of this to them, because we feel like there’s not enough overlap between DNA forensics and the DNA applications in human identity and the use in human genetics, which is largely focused on medical genetics, but it should be broader. So, we hope to bridge that gap.
Laura: That’s wonderful, and I feel like that’s a theme that I’ve heard a lot this year. So, that’s good to see that pushing forward. Have you attended ISHI before?
Jen: I have not.
Laura: You haven’t? So how are you finding your first time?
Jen: I’m enjoying it.
Laura: Oh good. I’ve seen you many times before. How is it for you this year?
Sara: It’s been great. I really like the… The sessions have been nicely rounded with multiple perspectives and less sciency in some ways. Some of them not enough sciency, but others… It brings it home and I really like to see different perspectives out there.
Laura: Yeah, how did you like the keynote?
Sara: It was great.
Laura: Terrifying. I mean in a, “wow, it’s the future. It’s here.” Anything else that we missed? Anything that you want to make sure that we include?
Jen: I don’t think so. It’s just continuing to think about genetics as an option. It’s always the implementation as to whether it’s going to go well or horribly awry, so to the extent that we can be proactive and prevent that great. To the extent that we can think about the implications before we do something, great. I’m just fortunate to be here and to talk to people, because there are some really great, passionate people, who are concerned about these issues, and we want collaborators.
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