March 21, 2024

Discovering the DNA of a Genetics Lawyer

Jennifer Wagner’s legal path always included a desire to advance equality and civil rights. But her anthropology passion (and eventual Ph.D.) laser beamed her legal focus to the cellular level: genetics and the human genome.

As an assistant professor of Law, Policy, and Engineering and Anthropology at Penn State University, this sticky lawyer has created a legal career that links our most basic human rights and the most basic building blocks of human life. Listen as she explains the privacy implications of genetic data in medical research and digital technologies, and what we should know about how our personal data is used.

Guest Insights

 

  • Jennifer’s path to the law by way of anthropology. [00:02:43]
  • How direct-to-consumer genetic testing tied into Jennifer’s legal interests. [00:08:55]
  • Legal areas related to her genetic focus. [00:11:22]
  • Genetic information vs. medical information. [00:13:04]
  • How consumer genetic testing changed the conversation about privacy protections. [00:14:55]
  • Who oversees protections. [00:17:21]
  • How the human right to science intersects with the human right to privacy. [00:23:28]
  • Her early work on creating healthcare policy around research data and informed consent. [00:28:55]
  • Teaching in a multi-disciplinary setting to avoid siloing her expertise. [00:30:09]
  • Advice about genetic data. [00:34:57]

Links From the Episode

Book referenced in the episode: The Social Life of DNA by Alondra Nelson

Chapters

02:43 - Jennifer’s path to the law by way of anthropology.

08:55 - How direct-to-consumer genetic testing tied into Jennifer’s legal interests.

11:22 - Legal areas related to her genetic focus.

13:04 - Genetic information vs. medical information.

14:55 - How consumer genetic testing changed the conversation about privacy protections.

17:21 - Who oversees protections.

23:28 - How the human right to science intersects with the human right to privacy.

28:55 - Her early work on creating healthcare policy around research data and informed consent.

30:09 - Teaching in a multi-disciplinary setting to avoid siloing her expertise.

34:57 - Advice about genetic data.

Transcript

John Reed [00:00:00] We live in an era of big data, which is ironic because big data usually refers to enormous collections of small data. For the most part, big data is a good thing. The more information and experiences and patterns that can be gathered and studied, the more we can predict outcomes, address problems, and generate solutions. That's the basis for scientific advancement. 

[00:00:30] But what happens when the data comes from our own genetics? Then, it's a whole new ballgame that involves privacy rights, consumer protection, and even implications for criminal convictions, not to mention moral and religious considerations. Sure, society is all in favor of progress, but not every member of society wants to personally participate. Especially if doing so might invite discrimination or loss of employment, healthcare, or insurance coverage. 

[00:00:58] The most rewarding aspect of doing this podcast is meeting lawyers who do remarkable things in incredibly unexpected fields and are incredibly invested in what they do. That's certainly the story of today's guest, a sticky lawyer at the forefront of genetics and genomics law.

[00:01:16] Jennifer Wagner, Ph.D., is Assistant Professor of Law, Policy, and Engineering and Anthropology at Penn State University where she serves on the faculty of the law school, the Department of Biomedical Engineering, the Institute for Computational and Data Sciences, the Rock Ethics Institute, and the Huck Institutes of the Life Sciences.

[00:01:36] That's a lot. The courses she teaches include Datafied Cultures and Privacy Law, Bioengineering Law and Policy, Engineers and Scientists Shaping Law, and Law and Precision Medicine. And I have every nightmare of not making that final exam and being unprepared for any of those classes.

[00:01:55] Dr. Wagner's research focuses on the international human right to science, and that's important. We're going to come back to that. That includes human-centered design and issues concerning discrimination, privacy, and equity related to genetic and genomic technologies, as well as mobile and digital health technologies.

[00:02:15] Listeners, if all this sounds like it might be just a bit over your head, don't worry. We're going to slow walk all the way through this stuff. 

[00:02:23] Dr. Wagner— Jen— welcome to the podcast.

Jen Wagner [00:02:26] Thank you for having me today.

John Reed [00:02:28] Let's start with the easy stuff. Let's talk about you and your career. You were, not surprisingly, the valedictorian of your high school class and now work and teach and advocate really at the intersection of law and science.

[00:02:43] What was your path from AP high school student to multi-degreed professor and legal authority?

Jen Wagner [00:02:50] Sure. It actually is a straighter, straighter path than what I think many people might think. It doesn't wind as much as the many names behind my title or in my title. So, I actually started out knowing I was going to go to law school, I think since fourth grade. I figured I would be an attorney at some point. When I got to college, I realized that the benefit of knowing you wanted to go to law school is that it really didn't matter what you studied as an undergrad. You could do literally anything that interested you and excited you. And I happened to be taking an anthropology class as a gen ed requirement. And I fell in love with it. I couldn't believe that people studied this and had this as a profession, just studying people. And I really tried to dive into all of the aspects of anthropology. 

[00:03:41] And the benefit is that I was at Penn State for undergrad and they have the top anthropology program. And so, I was able to have experiences like an archeological field school, you know, osteology, paleo pathology studies abroad, and also found a genetics lab that I participated in as an undergraduate research assistant. 

[00:04:02] As I was in that research area, I really came to be passionate about this intersection of science and law. And then decided, well, you know what? It's not enough to get the JD. I'm going to need the Ph.D. also. And so, I actually ended up starting the Ph.D. program first. I went to the University of Michigan. And the timing of when I was there just left me unsettled, thinking about how the legal profession didn't have enough awareness of some of the science, and I decided to leave early and go to law school.

[00:04:36] I thought that I, I shouldn't spend any more time focusing on the science. I had enough that would give me the tools that I needed for the legal profession. And so, I left and went to University of North Carolina for law school, but still was trying to stay up with the science. I actually hung out with Ph.D. students who were getting their degrees in all sorts of scientific disciplines, and studied international human rights law [the] summer of my second year of law school. And it just so happened that one of my professors from undergrad was on sabbatical at Trinity College, Dublin, and I had the opportunity to sit in on some genetics meetings. And this time I was really feeling like the scientific discipline needed to have a better understanding of the legal framework, the social context in which they were conducting the research, to design better studies, to anticipate the implications of the findings of whatever research they were conducting.

[00:05:32] And I realized that getting the JD was not going to be enough. So, it's like I had that epiphany once more, and ended up getting my Ph.D. after the JD. So that's how I ended up with the degrees. And then since that time, I've really stayed at this intersection of science, law, and policy.

John Reed [00:05:49] So my limited experience with anthropology was a middle school class I took; it might even have been ninth grade, which is just as bad. And I remember looking at diagrams of rock formations and charred pottery and trying to figure out what community this was. And it looked to me more like “origins of civilization” rather than the science. And so, you mentioned that within your anthropological studies, there was a genetics lab. I guess explain more how you gravitated towards that specific discipline, if it is one, within genetics from the general scope of anthropology.

Jen Wagner [00:06:33] Sure. So, anthropology is typically viewed as a four-subfield discipline. So, linguistics, cultural, archeology, and biological or physical anthropology, depending on who you talk to. And you know in terms of anthropometrics and anthropological genetics, it's really trying to understand our shared human heritage and our shared genetic and genomic information and how that shapes the variation that exists today. So instead of studying things like medical conditions and diseases, actually, at that time I was studying just diversity, what they call non-disease variation, quote-unquote “normal variation.” 

[00:07:15] And specifically what got me really interested in it is that I always had a sense that I wanted to do something for justice. I wanted to be into civil rights and advancing equality. And it struck me as very important to understand the different traits, to speak candidly, the traits that people use to treat each other like garbage. I wanted to understand what the biological basis of them was or is, with the hopes, perhaps naively, the hopes that if we understood the science, we could demystify these traits and we could use that scientific understanding to help encourage people to treat each other better. So, to demystify this concept of race, which is not biological. And so, anthropometrics and anthropological genetics really resonated with me as a means to do that. I was studying skin pigmentation variation. I was studying hair texture and variation in color of hair and eyes, you know, those kinds of traits.

John Reed [00:08:20] What really strikes me here, Jen, is what you're talking about in my mind, sounds historical, that it's looking back, right? It's saying, okay, this is what was, and yes, we can explain or try to explain things leading up to today. How did you gravitate from that kind of historical view of how we got here to what are the implications of this going forward, such that there needs to be an analysis of the law, legal protections, legal scholarship on this?

Jen Wagner [00:08:54] Sure. So, the long and short is DNA ancestry testing. Direct-to-consumer genetic ancestry testing hit the market at about the same time that I was starting my Ph.D. program. And to me, it was an opportunity to connect with your past using present data. And it also had very real implications for social connections and your legal status in some instances in the present. So, there's actually a book that I would highly recommend. It's Dr. Alandra Nelson's “Social Life of DNA,” and it talks about a lot of these issues in terms of how we use this information to make sense of ourselves, to make sense of our place in community and group structures. And so, for me, it was recognizing that humans continue to evolve. We're continuing to change, and genetics is just one part of that. 

[00:09:52] Another aspect of what got me really interested in this, thinking about that past and present and even future connection, is the timing of the Human Genome Project. And recognizing that people were, in my view, giving genetic and genomic information more power than it deserved in terms of what we know about genetic variation in terms of how genetic variants cause or contribute to conditions and diseases. And for me, it wasn't that understanding the genome solved those questions that we care about from a health standpoint. It was actually that it helped us ask better questions. And so I was really interested in perceptions of genetic and genomic information, translation of that information into settings like law enforcement and court proceedings, and how the genetic information would get used in making different legal determinations, whether that's immigration or anything else.

John Reed [00:10:55] So let's kind of break that down. From what you just said, there's a civil, maybe even a property rights discussion. There is a criminal context. There is a civil rights context, kind of going back to what you said before about people treating each other badly, which -- legal term discrimination amongst other things. Does your work encompass all of those areas?

Jen Wagner [00:11:19] From time to time it does. Yeah. Yeah.  So, in terms of my dissertation for my Ph.D., I was focused very squarely on legal implications and social implications of the DNA ancestry tests. And that took me from everything from thinking about law enforcement and predicting traits, predicting phenotypes from a DNA sample, for example, that had me in genetic privacy issues. I also was dealing with aspects of indigeneity and thinking about how indigenous peoples and Native Americans used or don't use this type of information and what the implications are there. And then my work subsequently has been in the medical space, and in immigration spaces, and a whole bunch of different legal contexts. So, I would say the bulk of my work has focused on privacy and non-discrimination issues. But it certainly has dealt with some of the other aspects that you mentioned.

John Reed [00:12:15] I guess we should stop here for a second, make sure we've got the right definition. So, genetics, the branch of biology that's concerned with the study of genes and genetic variation, heredity in organisms. Genomics goes deeper. Focusing on the entire picture of an organism's genetic makeup, the genome.

[00:12:37] And thank you, Google, for that, because I could not have come up with that myself. But in what we've been talking about here for a moment or two, and this is where I got confused, is genetic information, not necessarily medical information or medical data? And I'm going to go on a limb and say I'm probably not far off from many other people who are asking what's the difference?

[00:13:04] I certainly have a right, I think most would agree, to privacy of my medical information. But did those same protections, I guess, go to genetic information? But now we're dealing with something different. And maybe you can help kind of reconcile those two things for me and what our interests should be and maybe what our interests shouldn't be in terms of protecting versus sharing that.

Jen Wagner [00:13:29] Sure. I'd love to settle this definitively so that no one has to...

John Reed [00:13:33] I'm giving you the platform. Go for it.

Jen Wagner [00:13:35] So I will say that I'm in the minority in thinking that genetic and genomic information is not inherently medical. My personal view is just because it comes from the human body doesn't mean that it has medical relevance or import.

[00:13:49] Really for me, it's the interpretations that we give to the genetic and genomic information that are really valuable in the clinic or in terms of thinking about how we promote health and wellbeing. So, I've been a long opponent of viewing the genome from a medical lens. I actually had been an early advocate for direct-to-consumer genetic testing for exactly that reason, thinking that there are some times when you're just interested in it from a purely curiosity standpoint. You're not looking to make health decisions or medical decisions based on that information. And then there are other times when you have a very real need for that information to answer medical questions or solve these kind of diagnostic odysseys that you may be undergoing. So, I would say, I think that the jury's still out in terms of the framework that will win the day, although it has been dominated by the view that it is part of medical information. 

[00:14:49] But let me answer your question about the protections, and do they apply? Do they not apply? One of the things that was challenging about the direct-to-consumer genetic testing when it came onto the scene is that it was a fundamental shift in how we were accessing that information, right? So up until that point, you would only be able to get genetic information if you were in a clinical setting and there was some need to have, you know, a particular gene evaluated. Or maybe if you were lucky, you would start to see some whole genome sequencing or whole XM sequencing for some more complex types of issues. That is something that generally is paid for by an individual or an individual's health insurance company. It has to have this learned intermediary. It has to have this expert serving as the go-between, between the individual and their information to make sense of it. 

[00:15:44] The other context in which you could gain access to your genetic information potentially, and this was a rarity, was if you would participate in a research project, in which case the researchers were funding, or the researchers would get, you know, an external sponsor, whether that's industry or maybe the NIH to fund the testing. And in that instance, you typically were not given your individual-level results back. You might get information about results from the study as a whole. So, you and the aggregate with other research participants, but it was very difficult to gain access to your individual-level information. 

[00:16:22] Direct-to-consumer offerings changed all of this. It did allow the individual to gain access to pay for it out of pocket. And you were effectively paying for the research to occur, but you would gain access to that information kind of as this exchange. It might not mean anything. It might be wrong. It might not be interpreted for you. The different representations of your results certainly were quite variable at the time. Would you get the individual genotypes; would you get a visual illustration? And if so, was that a graph? Was that a map? You know, who knows what it might be? And so, it did change kind of this framing of how do you get the information, what kind of guardrails are in place to ensure that this is accurate information, that you're not being misled, that there aren't misrepresentations and things like that. 

[00:17:14] It also changed how we go about establishing that you're part of a protected class. So, you asked about the protections, and here is where historically the United States, and even to this day, the United States takes a very sector by sector approach or context-specific approach to data privacy and data protections. And so, whether or not your data are considered protected health information depends on whether you're getting access through a HIPAA-covered entity or a business associate. If it's in the research setting, maybe you're at an educational institution that's governed by the common rule for regulations for human subjects’ protections, in which case different protections would apply. But in commercial spaces, there really isn't all that much, aside from the Federal Trade Commission Act, and its broad privacy protections that apply there.

[00:18:06] And so it really challenged this notion of, or the direct-to-consumer world challenge this notion of who's responsible for oversight in this space? Is it the FDA? Is it the FTC? Is it someone else? And that's really, from a legal perspective, what was really challenging and what was fascinating for me, as this industry started to take off.

John Reed [00:18:28] So that was then. Where are we now? We've got the FDA, we've got the FTC, we've got the courts. We've got all these different overseers. Have we moved towards some sort of consolidation? And also, is there also a state versus federal dispute or conflict in some of these areas?

Jen Wagner [00:18:50]  I think in terms of FDA purview, that's still an open question. How much reach does the FDA have? I mean, they're really dictated by those statutory definitions and their charge. Most of the direct-to-consumer companies have acquiesced, have basically said, "Okay, FDA. We recognize that you have some authority here. We're going to play that game." 

[00:19:13] But I think the Federal Trade Commission has a tremendously important role, at least in so far as we're talking about information privacy that goes along with it. Aside from how reliable are these tests? You know, the specificity and sensitivity of them, et cetera. So, I think the Federal Trade Commission plays a huge role. 

[00:19:32] In terms of the genetic privacy, if we just talk about genetic privacy narrowly, there is no federal law that gives broad genetic privacy rights, federally, aside from the Genetic Information Non-Discrimination Act, which only applies in two instances, and that's health insurance and employment. 

[00:19:52] So we do have the state issue because states have been trying to pass their own laws and really close those gaps and provide heightened protections. We have CalGINA in California. We can turn more specifically to Washington's My Health My Data Act, which goes beyond just genetic information and says we want to close that gap on digital health information. And then you have some different states with very specific genetic privacy laws for different types of contexts.

John Reed [00:20:23] I got the impression that the element of one's identity changes the whole discussion. If you want my genetic information and with that, you know that it's me, then of course you're bringing in the discrimination discussion, right? If you know it's me and you know I've got an abnormality that would somehow impact insurance coverage, healthcare coverage, whatever it may be, employment, whatever it may be, we get that. That's kind of clear.

[00:20:56] But the idea that my genetic information as part of a whole slew of others' genetic information where maybe I'm a number if I'm identified at all, but it's for research purposes for the greater good, for science— that changes the conversation. I know it's overly simplistic, but I'm trying to understand how they'd be at odds with each other.

Jen Wagner [00:21:19]  I think that there are disconnects in terms of our recognition or acknowledgment of the identifying nature of the human genome. So, a DNA print, a DNA profile can identify single individuals out of everyone that's there. And in the research setting, we kind of dismiss this. In the biomedical research space, we dismiss this and say, well, as long as the genetic information is not tied to or linked to your other identifiers, then we're going to ignore that the genome itself is an identifier. And we're going to allow secondary research. We're going to allow that to be shared in many ways, like you said, for the greater good. 

[00:21:59] In the law enforcement space, in the forensic space, it's exactly the opposite. We focus in on the fact that your human genome can identify you. And we forget the fact or ignore the fact in those instances that the genome also holds the potential to make a lot of inferences about your medical risks for a variety of conditions or even trait prediction and the like. And so, in that instance, we say, okay, well we're only going to look at specific markers. As long as we only look at specific markers in the genome, we can ignore all of that other information. And so, we do take very context-specific approaches to what that means. So, the short answer to your question is yes. I think that that identifying aspect does cause us to act in different ways, depending on what the purpose of looking at that information is.

John Reed [00:22:52] Like most of my life, all this stuff is influenced by television, right? I'm watching “Finding Your Roots,” and they bring two guests together and say you're third cousins. The DNA sample proves it. And then there's also the saliva swab of the “CSI” victim or the “Law and Order” victim or whatever.

[00:23:09] But I think what's left out of this is this idea that you have at least, ideally, empirical research being done where the researcher says, look, I just want the collection of information. I'm not interested in the individual and how the law treats that differently. 

[00:23:28] It's very prominently featured in your bio, and we did talk about it before, and that is the human right to science. And maybe you can expand on that in terms of at what point does the human right to science outweigh the individual's privacy interests?

Jen Wagner [00:23:45]  The human right to science does not need to be viewed in conflict with the human right to privacy. That's the short answer. 

[00:23:51] I think in terms of the longer answer, the international human right to science. What I find most interesting about it is that we often think about the downstream effects of research, right? Are you sharing in the benefits of those innovations, right? Can you get access to the tremendously exciting gene therapies that are available or emerging? Are those affordable? Are those benefits distributed equitably to everyone around the world? But there's also the front end of it, which is actually conducting the science, being engaged in that scientific inquiry.

[00:24:27] As a researcher, as a participant, as a community member, getting to have a say in even what questions are being explored, what data are being generated and collected and analyzed. And then what happens afterwards? And so, it's really sharing in the benefits of these scientific discoveries and advancements, but also participating in their generation.

[00:24:51] So in terms of the privacy aspects, I think one thing that we are understanding now is that different people have different values, different priorities.

[00:25:02] I think if you ask individuals, and I have asked individuals, what's more important to you? Contributing to science and helping researchers better understand certain conditions or diseases or controlling your medical privacy? And they'll say, oh, well, it's important to do the research.

[00:25:21] And depending on how you frame that question, they'll come out the other way. So there's inconsistencies because both of those things contributing to our understanding and maintaining our privacy are important to us, and it's just to varying degrees. 

[00:25:36] I think what researchers and policymakers are now grappling with is how do we actually incorporate those human interests and variability in how willing we are to share our information for that public interest, that good of science. How do we do that? How do we enable dynamic consent? How do we enable you to perhaps say, yeah, any researcher who's studying kidney disease I want you to be able to use my information. Maybe I had someone close to me who had kidney disease, and so it's something I'm really passionate about, versus, oh, you're studying cardiology? I don't want you to have access to my data. 

[00:26:16] There's a level of granularity that maybe some want to ensure is done with medical research writ large, but that comes as a cost. The more granular, the more sensitive controls we have over what can and cannot be done with our data, the harder it is to do research. And so, there is a strong argument that we should be all in. If we were all in in this endeavor, then we'd all have the discrimination risks. We'd all have similar privacy risks because all of our data are being used in similar fashion.

John Reed [00:26:52] And I'm trying to find exceptions, but so much of culture around the world is more of an opt-in than opt-out. Yes, we believe in community, and yes, there is this concept of the quote, unquote “greater good,” but there's also tribalism, and I'm different, and I want to be part of a different group. Or I'm an individual, or even moral and religious reasons for me not wanting to opt in and give my information freely, give myself freely to a greater cause. 

[00:27:21] The other thing too that I find interesting is you have an exceptional role in that you can do the research, that you can then analyze, that you can then apply to the policy. It's one-stop shopping for important legal issues as opposed to only living in one of those particular phases. Am I characterizing that right?

Jen Wagne [00:27:51] That's one of the reasons why I enjoy it, right? I'm a bit of a workaholic. I admit that. But what's nice is that on any given project, I might be wearing different hats. And so, I find that to be quite enjoyable.

John Reed [00:28:04] And when we get to that end stage, that idea of impacting policy and having it becoming practical, you have an impact. If I'm not mistaken, you've been cited by the U.S. Supreme Court.

Jen Wagner [00:28:16] I have. I say I peaked early, right? That it happened at, I think it was 33 when that happened. I was very excited. And one of the things that's so gratifying about that is the Supreme Court cited me for my genetics, my scientific work. Someday, maybe they'll cite me for my legal interpretations.

John Reed [00:28:34] Treat it as a twofer. I would just run with it. 

Jen Wagner [00:28:38] I like that.

John Reed [00:28:39] Talk to us about the other ways that your work is having a very real impact on policy, on real world applications.

Jen Wagner [00:28:48]  Sure. So, I guess I always want it to have more impact, but I'll take modest impact wherever I can find it, right? So, prior to joining Penn State's faculty, I was at Geisinger Health System in their Center for Translational Bioethics and Healthcare Policy. And while I was there, I very much was conducting research that would help inform healthcare policy related to research data, related to informed consent. So, I helped with shaping the All of Us research program and worked with some wonderful colleagues on the informed consent process there to ensure that research participants, regardless of whether they're participating from Pennsylvania or California or Florida, or wherever, would have an equitable research experience. And that's quite tricky when you recognize the different state laws that might apply even in the healthcare space, where we tend to have a more uniform approach with the federal laws that are there. So that's one example, I guess. 

[00:29:47] And then through my teaching, I try to help future scientists, future engineers, know how to engage with policymakers, and I try to teach law students how to be more influential with the scientists and technologists and engineers that they might interact with, either as clients or in the courtroom.

John Reed [00:30:08] So let's talk about this. Do you spend your day running from one academic building to another, or do your students do that? Are your classes multidisciplinary or are your courses specific to the colleges in which you teach?

Jen Wagner [00:30:23] I pride myself in not siloing the expertise that I have. Actually, all of the classes that I have taught at Penn State have been multidisciplinary. So, in the same classroom I have anthropology Ph.D. students. I have computer scientists, upper-level undergraduate students. I have law students who want to go from everywhere, from healthcare sector to patent firms, and the like. I have LLM students who are coming internationally. And you know, just anyone, nursing students. I have students from all different backgrounds from a disciplinary perspective and from a geographic perspective, at least if they're at Penn State. 

[00:31:05] And it makes it challenging for me from the standpoint of I don't have prerequisites in my classes. I try to use that first week or two weeks to onboard everyone and say, okay, what is the US governmental system? What does our legal system look like? And not assuming that they know there are three branches of government and what federal preemption might be. Which, you know, you have to set that foundation if you're going to have these nuanced conversations about governance and oversight and who's in a protected class or not. 

[00:31:37] And so, I have that as a baseline. And then, on the other side, I bring in primers of what is the human genome? What is A, T, C, and G? What do those mean? What is a polygenic risk score? So that there is a foundational scientific understanding so that we can approach these topics as well. So, in every class that I've taught, it has been this interdisciplinary environment, and I love it. I absolutely love it because even if you're teaching the same course, you're never having it go in the same direction because the conversations are going to meander. I let them meander based on the disciplines that are represented in the room.

John Reed [00:32:16] I'm a huge fan of teachers all day long, every day, whatever. And the more engaging and active the classroom is, the better it is for everybody, but the teacher included. So, talk to us about what your students are bringing given that they're coming from all of these different places.

Jen Wagner [00:32:33] So I find it fascinating. I find it very rewarding. I'm actually experimenting with something this semester where instead of a full three-credit course, I've actually offered three separate one-credit short courses that are intended just to maybe whet the appetite of students who are thinking about this space, but maybe they're a little bit afraid that it will take up too much of their time or they'd have to study so much for them, or, maybe they come from one background and not the other. And so, they worry about whether they'll be able to keep up. And that's been really, really interesting. 

[00:33:05] One of the classes is Intro to US Law and Biometrics. And so there I have computer science students and genetic students and law students. But you asked, how does the classroom work? What do the students bring? I genuinely believe in expertise coming from lived experience. Not just professional credentials or your professional work. And so, for me, I want to know how they're coming at these topics. Privacy law and policy is very much being driven by what's in the public sphere, not what the legal scholars think about it, right? It's perception. I love when students feel open and comfortable, willing to talk to us about whatever's on their mind, no matter how harebrained of an idea it might be. And so, I try to create that space for them to do that. 

[00:33:58] I certainly don't know all the ins and outs of every kind of engineering that there is, right? And so, I come humble into the classroom and try to show yes, I like to learn a lot. I would like to learn from them just as I hope that I'm able to impart knowledge in the other direction. But the conversations really have been wonderful. I get smarter every time I'm teaching.

John Reed [00:34:22]  Well, that's the sign of a good teacher that you're not the smartest person in the room necessarily, that you're willing to learn from those around you. 

[00:34:29] Let me ask you one last question. What's the one thing, whether it's a misperception or misnomer or just something that people don't think about, that people should know about their genetic data, protecting it, and why we should share or protect it? I think we've touched on it at a higher level, but kind of the one thing, the one piece of advice or misperception you'd like to clear up for people.

Jen Wagner [00:34:57] So I guess my advice would be don't get so hung up over how special your genetic information is. It's not that special. It's special just like everyone else's. And so, for me, I think it's tremendously important for us to open up to share those vulnerabilities and allow science to get better through inclusive research. There's a downside of not being included in research. It means that everything we learn is potentially skewed. And won't be as relevant for you and people like you. 

[00:35:33] And so I think for me, it's about, yes, you don't want to do silly things and put yourself at unnecessary risk. But for observational studies, and specifically with how easy it is to give up a biospecimen for genomic research, I would like people to see the downstream benefits of that and recognize if we're all in it together then we're sharing in those risks together. And hopefully that allows us to be a little bit more kind, a little bit more attentive to when we are using those data. So yeah, I guess that's my advice is that don't get so hyper-focused on the privacy that you lose sense of the good that you can do by contributing to research.

John Reed [00:36:20] Jen, thank you for taking the time to teach me, to parse through this very complicated but important area. I confess I had no idea about the depth and breadth, the many tentacles that are involved here. And I just, I appreciate the education. So, many thanks for joining us.

Jen Wagner [00:36:38] Thank you.

John Reed [00:36:39] To learn more about Dr. Jennifer Wagner, visit stickylawyers.com, where we have links to her academic bio, publications, and other information. There's a lot there to supplement our brief discussion today.

[00:36:52] Regardless of where you found us or may be listening to us right now, please take a moment to click that follow button. That way you'll learn more about new episodes when they come out, and you'll be letting us know that you're a fan, what we call a stickler, and we would appreciate that. 

[00:37:11] Until next time, I'm John Reed and you've been listening to Sticky Lawyers.

[00:37:17] 

 

Jennifer K. WagnerProfile Photo

Jennifer K. Wagner

Genetics Lawyer

Jennifer K. Wagner, J.D., Ph.D., is a licensed attorney in Pennsylvania and an assistant professor of law, policy, engineering, and anthropology at Penn State University. Her research focuses on the international human right to science, particularly in genetic/omic and mobile/digital health technologies. Dr. Wagner is a current member of the Pennsylvania Bar Association's Cybersecurity & Data Privacy Committee and formerly served as chair of the ASHG Social Issues Committee (now known as the Professional Practice and Social Implications Committee), co-chair of the Ethics Committee for the American Association of Biological Anthropologists, member of the AAAS Committee on Scientific Freedom and Responsibility, and member of the Scientific Advisory Board for Sage Bionetworks. Dr. Wagner is an associate editor for Human Genetics and Genomics Advances.