Making New Laws for New Scientific Discoveries

Penn State undergrad Emma Sieminski interviews professor Jennifer Wagner about her research at the interface of emerging science and law.

Emma Sieminski
Undergraduate Forensic Science  student at Penn State

Jennifer Wagner
Assistant Professor of Law, Policy and Engineering at Penn State

Transcript

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Mark Shriver:

From Penn State’s Center for Human Evolution and Diversity, this is Tracking Traits.

[MUSIC FADES]

Cole Hons:

Greetings fellow homo sapiens, this is Cole Hons from The Huck Institutes of the Life Sciences. Welcome back to the podcast. 

For Episode 2 of this third season, we bring you Penn State Forensic Science undergrad Emma Sieminski interviewing Jennifer Wagner, assistant professor of Law, Policy and Engineering at Penn State.

Dr. Wagner is a multidisciplinary expert whose research has been focused on the international human right to science, including human-centered design and matters of nondiscrimination, privacy, and equity with genetic/omic and mobile/digital health technologies. She’s published over 60 journal articles, and her work has been cited by the Supreme Court of the United States.

In this podcast conversation with Emma, Dr. Wagner explains why she has such a passion for working across disciplines and integrating multiple perspectives to achieve a more comprehensive view of the many complex issues currently arising at the intersection of law, science, and technology. 

Additionally, she speaks eloquently about the need to anticipate the potential consequences of new and emergent technologies before they are widely adopted in society, so that serious negative consequences can be avoided before a crisis occurs. 

Here's Emma Sieminski interviewing Jennifer Wagner about “Making New Laws for New Scientific Discoveries.”

[MUSICAL INTERLUDE]

 Emma Sieminski:

All right. Thank you so much for joining me today, Dr. Wagner. So for the first part, I'm going to ask you to introduce yourself, and give me a brief summary of your research.

Jen Wagner: 

Sure. So my name is Dr. Wagner, and I am an assistant professor of Law, Policy, and Engineering, which is in the School of Engineering Design and Innovation. The Law, Policy, and Engineering initiative is actually a collaboration between the College of Engineering, the Law School, and the School of International Affairs. The research that I do really transcends any kind of departmental description or boundary. The work that I do could be described as ELSI research, ethical, legal, and social implications research, or I'm calling it “anthro-engineering.”

And this work relates to everything from genetic and genomic technologies, to health information technologies. And really what I've been doing over the past several years is thinking more about the international human right to science, and also trying to advance issues related to human-centered design, non-discrimination, privacy and equity in all things that could be called precision medicine or precision health.

Emma Sieminski:

Wow. So it seems very clear that your work is about as interdisciplinary as it gets. You've worked in anthropology, law, health, engineering, as you mentioned, and even more. So before we get into some of those more detailed aspects of your work, how did you first get into the fields that you're in now?

Jen Wagner:

Sure. So I think going back to childhood, maybe even as early as third, fourth grade, everyone who knew me knew I would probably end up being an attorney. I'm going to go ahead and say that that was because they saw me as a strong advocate for issues I believed in. Maybe I was strong-willed, obstinate, take your pick. But yeah, I was drawn to law from a very early age, definitely influenced by detectives like Sherlock Holmes stories, TV shows like Matlock. And when I came to Penn State as an undergrad, actually I realized that intending to go to law school, it didn't really matter what I chose for my major, I could do absolutely anything and still apply to law school.

 And I just happened to be taking an anthropology course as a general education requirement, and I was amazed. I couldn't believe that people did this for a living. I was fascinated, and it really sucked me in, and got me interested in learning all aspects of anthropology across the sub-disciplines in that department. So I did some paleopathology work for my honors research. I did an archeological field school, but I'm afraid of snakes and I'm allergic to the sun. So that clearly was not the career path for me.

 And then I fell into a really fantastic opportunity with Dr. Mark Shriver in the anthropological genetics and anthropometrics lab, studying common traits. So I was studying all of the superficial kind of traits and features that people use to honestly treat each other like garbage. And perhaps, naively, I thought that if we understood the science that underpinned those traits, we could demystify it and really tackle racism, and ethnocentrism, and all of the biases that were around us at the time. So that's how I fell into anthropology and the genetics lens of anthropology.

 And I continued my work in this kind of law and, shall we say, common traits, nonmedical variation, human variation in biocultural context in graduate school as well. So I did my undergraduate at Penn State, then I did some graduate studies at Michigan in a program in biomedical sciences. And I left that program to go to law school at North Carolina. And then I came back for more. I came back to Penn State for my PhD, and studied the legal and social implications of DNA ancestry testing. And then I did two postdocs. I did a postdoc at Duke in the Institute for Genome Sciences & Policy, and then a postdoc at the University of Pennsylvania in their Center for the Integration of Genetic Healthcare Technologies.

 And at both of those institutions where I did postdoc research, that is where I really was introduced to this formal concept of ELSI research, ethical, legal, social implications research, which is supported by the National Human Genome Research Institute. And so this interdisciplinary work was kind of valued and supported by the NIH, and I really was fortunate to not only be conducting research that's multidisciplinary, but to have been trained in that multidisciplinary way.

Emma Sieminski:

Wow. That is quite the journey. And I also really like that you mentioned Sherlock Holmes, because those novels are 90% of the reason why I'm in forensic science right now. So (laughs)…So, one of the things you mentioned in the introduction was one of your guiding principles, which is the international human right to science. So can you talk a little bit more about what that means, and how that's guided your work?

Jen Wagner:

Sure. So the international human right to science is something that's mentioned in the Universal Declaration of Human Rights, and it then was articulated in one of the international conventions that's part of the International Human Bill of Rights. And what it really means is not just the right to participate in science as a study subject or a study participant, but also the right to conduct the science and really contribute to what scientific questions get asked, how we ask them, how we answer them, as well as the downstream effects­—so how we distribute the benefits of scientific and technological advancements.

 So the work that I do is really focused two-pronged, right? It's on that front end in the study design and who's involved in that process. And it's also involved after the studies are completed, in terms of how do we translate that scientific knowledge, or how do we distribute those technological innovations so that we can make the world a more equitable place?

Emma Sieminski:

So another thing that you mentioned is your work in investigating biases and discrimination. And I was wondering how has your multidisciplinary background helped you investigate those things in scientific and anthropological fields?

Jen Wagner:

Sure. That's a complicated question. There's a lot there, so hopefully I won't ramble too much. I think that the multidisciplinary approach is essential when we're trying to tackle these kinds of issues. The scientific research that we conduct is conducted within the context of the laws, and policies, and cultural norms that we have in place. And likewise, how we're translating the science, it also happens in those contexts. I think that we need to understand the scientific underpinnings of those biases, but also then do something with that information. How can we have disruptive innovation, not just in science, but in the policy side?

So I think about ways to kind of question the status quo, question the laws that are in place and how they actually are playing out. Some of this, in terms of my own research, has focused not just on say, explicit biases that are done with intention, and just really hate in your heart, so to speak. But also structural biases, institutional biases, implicit biases that sometimes are encompassed by what we call disparate impact. So disparate impact instead of disparate treatment, has been a lot of what I've been working on, in terms of really examining existing laws that we have that, in theory, should protect us and ensure equality under the law. But in practice, it's not really playing out that well.

Emma Sieminski:  

As you've mentioned a couple of times, another area of your research is ethical, legal and social implications of genomics and precision health. First of all, can you explain a little bit about what genomics and precision health are, and what your work in these areas looks like?

Jen Wagner:

Sure. So sometimes the words are used interchangeably. They're buzzwords. People will say genomic medicine, people will say precision public health, or genomics public health, or public health genomics, or precision medicine, precision health. There are a lot of different words that are tossed around, and they don't really act as synonyms. They're quite close to one another, but they are distinct. Precision medicine could include genetic and genomic information, but it could include lots of other things too. Lots of data from non-traditional sources, that are then applied in the healthcare setting, like wearables, consumer technologies, you know, your Fitbit and other kinds of fitness trackers.

 Information that you get about where you live, where you work, who you interact with, kind of social determinants of health that we get from say, consumer data. So it can encompass a lot of different technologies, a lot of different omics, as well as genomics. If we're looking to distinguish precision medicine from precision health, that is really one of intention in some regards, and one of scope. So, precision medicine tends to focus on the individual at point-of-care at any given moment in time. And precision health is broader, thinking more along the lines of not just treating problems once they manifest themselves, but preventing those problems, and anticipating those problems. So, some people have referred to it as anticipatory medicine.

 And one of the challenges is that when we get into that space, anticipatory medicine looks a lot like public health, and the ethical frameworks that guide those decisions and practices might need to be aligned, and they aren't always harmonized. So that's kind of the underpinning of genomic medicine, precision medicine, precision health.  

 So ELSI research, or ethical, legal, and social implications or ethical, legal, and social issues research really is kind of the application of all of these kind of social science fields to the technical aspects of the Human Genome Project. So when the Human Genome Project was getting started, the people leading the charge for having that being supported, recognized that it was potentially going to be a disruptor, and cause a lot of angst. And people would have questions about what do we do with this information? What do we do with these technologies? How do they apply in the courtroom, or in employment context, or in the healthcare space, or in forensics?

 And so as part of that initial endeavor for the Human Genome Project, there was a decision made to have the NIH dedicate funds specifically for this type of work. So that it wasn't just an afterthought, it was developing this body of scholarship, and hopefully some potential solutions to try out and improve along the way, for how we deal with genetic and genomic information in various contexts.

 So the NHGRI, the National Human Genome Research Institute has a program dedicated to ELSI research and it supports investigator-led research, as well as sometimes they'll put calls out for centers. The two places where I did my postdoc research actually had centers of excellence in ethical, legal, and social implications research. And so that's kind of the context with which I was able to develop some of my own research portfolio.

Emma Sieminski:

Wow, that's really interesting. So in a bit of a broader sense, what is your favorite part of the research process?

Jen Wagner:

Whooh…I guess I would say my favorite part is the research design process. Actually you know, thinking about the questions and how we're going to answer them and who's involved in that process. I'm known for saying to a lot of people that I want to be radically collaborative, right? A lot of my work can take very different kind of paths. It can go in very different directions. It's the methods that I use that are the same. It's the approach that I use that's the same. But in terms of the actual problem, I'm relatively agnostic to what conditions I'm studying, even what context I'm studying, am I in the healthcare space or not in the healthcare space? I've done some work in the forensic side, too, and in the commercial side. And so that research design step, I think is so, so critical.

And I'll give another detail there, which is I firmly believe that law, policy, and ethics should not be an afterthought. It should not be something that researchers just think about when they're trying to publish an article, and they have to have an ethics statement in that manuscript. Or something that we think about after a technology is on the market and out there, and something goes wrong. Usually, humans tend to make bad decisions in those kinds of really pressurized situations. So if you're being sued, or if something goes wrong in the medical side, it could be literally a life and death kind of situation. Those generally are not great times to start thinking about broad policy, right? You're trying to remedy a situation, and it usually is very emotionally charged, and that can lead you to make decisions that you wouldn't otherwise make if you had a level head and time to contemplate various aspects of that.

 And so the research design phase, I think is just absolutely critical and an exciting time to think about how you can integrate law, policy, and ethics, and actually study it. You know, not just say, “this is the way,” but study, is it really the way? Is this really what's going on? So that that is developing at the same time whatever technical science is moving forward too.

Emma Sieminski:

Yeah, for sure.  Sticking along with the broad sense, what aspects of your work are you the proudest of?

Jen Wagner:

I have to say that I'm most proud when people that I've worked with, whether they're student researchers, or collaborators or others, you know, come up to me years later at a conference. Or send me an email out of the blue, that kind of shares how something I did or said, or something we did together changed, not changed their life, but changed kind of, something that they are doing in their work or has had an impact on their lives. Or it's just that positive feedback of, okay, I had this random student in a class in 2012, and they reach out years later saying, “Your class was really hard. But oh, I've really enjoyed those readings and they’re the ones that I keep going back to after I graduated. O, the recommended readings that you shared. I'm finally working my way through those, and I'm finding them fascinating.”

 That brings me joy, because a lot of what I like to do is kind of connect the dots, not necessarily go deep into a research area, but to focus on breadth. I think we need both. But yeah, I would say those kind of out of the blue comments brings me quite a bit of joy and makes me proud that I've done something that's had meaning. I guess I should also mention it's not bad to have your work cited by the United States Supreme Court, so that's also something I'm proud of.

Emma Sieminski:

Thank you for mentioning that. I am very, very fascinated by that. So that's a pretty big deal, obviously. Can you give a little context into what that case was, and what work was cited?

Jen Wagner:

Sure. So that case was a case involving genetic privacy, specifically within the context of criminal law and criminal procedure. So, the case was known as Maryland versus King. It was decided in 2013, Justice Kennedy wrote the majority opinion. And the question before the court was basically, is it a constitutional practice to take genetic fingerprinting to do a genetic profile using CODIS markers? So a set of short tandem repeat markers, to identify people who've been arrested?

So the issue was, is this constitutional, even though people have not been convicted? So during the booking procedure, could DNA fingerprinting be part of that, just like hand fingerprinting, or checking someone's ID, and doing the mugshot photos? And so, it was really a question about what is reasonable, what is a search and seizure? And at issue was what exactly can we tell from genotyping those specific markers, right ?

 Does it give us only information about identity, who this person is? Or does it also allow us to glean all sorts of potentially sensitive information like medical information, or things about you, your personality, maybe your medical conditions? And so what I did was, I reached out to a colleague of mine, Sarah Houston Katsanis. And I said, "You know, the courts are continuing to first make this horrible analogy to junk DNA, right? They're talking about junk DNA, and that's really problematic. But the other issue is that they're looking to the scientific literature and they're not finding the answer to the question that they have."

 And so I said, "What they really want to know is, from genotyping these markers, do you get other information with reliability, or do you just get identity information?" And scientists were obviously studying lots of aspects about these markers and the whole genome, but they weren't asking the question or publishing the answer in the way that made sense to the courts and made sense to advocates.

 And so I specifically said, let's do some research looking specifically at these markers to see what exactly is known. Like, “are there causal connections with different traits and phenotypes? Or is it what the FBI is saying, in that, these are just identity,” right? The markers themselves were chosen so that they wouldn't tell us anything about traits. And so the question was, “is that actually the case?”   Because we know that scientific knowledge changes, and genomic technologies change. And so even if that was the case when those markers were selected, was it still the case when this litigation was before the Supreme Court?  

 I could see the cases percolating in the court of appeals in various circuits. So it hadn't quite yet reached the Supreme Court level when we were conducting the research. But we did the research, we published it in the Journal of Forensic Science, and it was there in time so that people could cite it in their amicus briefs. And so that's how the Supreme Court found out about it, and then they cited it as one of the bases for their decision.

Emma Sieminski: 

Wow. That is…I just can't even imagine having that accomplishment.

Jen Wagner:

I was pretty excited because it really does speak to my multidisciplinary approach, because that I'm super proud that the Supreme Court cited my scientific work. It would be great for them to cite my legal work, but to have them cite my scientific work makes me very happy.

Emma Sieminski:

Yeah, for sure. Something that you mentioned, I wanted to ask about is the idea of junk DNA, and how that's sort of a problematic depiction.  What do people mean when they refer to junk DNA, and why is that problematic?

Jen Wagner:

So people don't always refer to it in the same way, which is one reason it's problematic. Conceptually, it's not a very good mental model. But the metaphor itself, it actually goes back to, I believe 1970 or 1971 was when the term was coined. And it related to kind of how we think about DNA, and RNA, and proteins. And there are parts of your DNA that never get turned into proteins. And so the comment was made in a presentation in the early '70s, that DNA that's not turned into proteins is junk. It's just that we don't know what it does. It's there, but it's junk. We can ignore it, it's garbage. Don't worry about it. And that we know now is not actually the case.

 But one of the problems, too, was that even at the time, we knew that DNA that doesn't turn into proteins, it doesn't mean it serves no function. It could serve other functions, it could be structurally important, and other reasons too. And so it really is unfortunate that it is a grabby kind of term that catches our eye, and it seems like an easy metaphor. And once those kind of mental models get established, it's really hard to undo them. So it's been hard to get around that language in the scientific space, but also now people are trying to make policy decisions, and cultural social decisions about what genetics and genomics really should mean in our lives. And they're falling back on that metaphor when it isn't really appropriate.

Emma Sieminski:

That's really interesting, because I've learned about junk DNA in different classes, and it's always sort of accompanied by the disclaimer of, it's not really junk, but it's still so ingrained that they have to tell you like that term. So although it seems pretty clear that your work has already had some pretty major impacts, how do you hope that your research overall impacts the world? And then I have to ask, what's next for you in your research?

Jen Wagner:

That's a great question. I have a lot of different projects that I'm just getting started right now. So I have one project that's focused on the ethics of synthetic data and ELSI focused computational checklists for artificial intelligence and machine learning algorithms. So basically kind of doing what I said earlier about trying to get scientists and technology developers to think about the ethics, law, and policy on the front end.

 So finding ways for them to think about that context, how it might be applicable to AI ML objects, and then kind of encourage trustworthy and responsible use of artificial intelligence. I have another project that I'm trying to move forward on biometrics, and thinking about the way in which biometrics laws and policies are developing across the United States, since we don't have a federal law. We know about Illinois having BIPA, the Biometric Information and Privacy Act. But Texas and Washington also have biometrics laws, Pennsylvania doesn't. But there's a lot of activity across the states right now in that space.

 And it has a lot of international kind of ramifications as we think about biometrics in different use cases by the government. And then another project I'm trying to start is on digital twins, and thinking about data justice, and how we are responsible about advancing digital twins, specifically in biomedical contexts. So data justice issues.

Emma Sieminski:

Wow, that's fascinating. I can't wait to see all of that come to fruition. So earlier, we talked about this idea of international right to science. How does that relate to the open science movement?

Jen Wagner:

So the international human right to science involves, as I mentioned, perhaps not this clearly, the right to participate in and share in the benefits of science. And so thinking about open science, we're really thinking about democratizing the process of conducting science. So making sure that instructions and scientific knowledge are not locked away, limiting who can actually conduct research. So promoting DIY, do-it-yourself scientists, citizen scientists, biohackers. Encouraging people who have interests to get involved, and to have the capacity to contribute to scientific knowledge.

 So we don't just want science to be conducted in a few institutions with deep pockets, and a lot of resources that have been accumulated over the years. But we want to widen that, have diversity in participation as researchers and participants, and asking questions that are useful to them, to their communities. So the open science movement, I think really does help advance issues of equity, issues of helping science be more inclusive.

 And that, in my mind, promotes and advances the international human right to science. I see them as very much aligned. This is particularly important I think, when we're trying to address racism, for example. I mentioned bias in our comments about my research earlier. And I think that we have international human rights treaties. So the UN came up with the International Convention for the Elimination of Racial Discrimination that was adopted in 1965 and opened for signature. The United States signed that instrument in 1966, but we didn't actually ratify it until 1994.

 And so it calls into question how legal instruments are not enough. We need to also have the normative change. Because international human rights law is often what we call soft law rather than hard law. And that means, we still often rely on national approaches, country by country approaches, to operationalize those obligations, and enforce those obligations aside and apart from the regional human rights bodies that kind of manage the international human rights instruments as they've been adopted.

 So I think the open science movement is tremendously important. I've been a strong advocate in many different ways, including my genetic information is online, you can research it. So I have my data out there that can be used for research. You don't have to pay for it, you don't have to give me royalties for using it. And a lot of other people do the same thing. So I support that way.

 I also support it through actually contributing public comments to policymaking. So when the National Institutes of Health was trying to revamp their policy on data management and sharing, I wrote comments to them and said, "This needs to be taken seriously. And you know what? It shouldn't just be something that's gets submitted with a grant application. It should be part of the scored application process. You should be thinking about this in the design phase, and the quality of your plans on how you're going to ensure equitable access to the technologies, to the information that you learn from that study, I think it's really important if we're funding that work through public tax dollars. So yeah, it's a great question, and I think the open science movement and the international human right to science, definitely go hand in hand.

Emma Sieminski:

Now, as sort of a last question I have to ask, what is your advice to the next generation of scientists?

Jen Wagner:

I guess I'd reiterate what I just said previously, is to appreciate paths you don't take and be curious, right? Curiosity is what led me to anthropology, but also allowed me not to leave behind other interests I had before I found anthropology. And so that is something that I really would like people to hold onto is curiosity. I guess I would just say I'd like scientists to be bold, to be unafraid to ask the questions that they think are important, and to include others in their work. 

 So if you choose to be that person who investigates a question, a very narrow question, and you become the expert in that very narrow space, bring others along for the ride, right? Try to find someone who will help connect to the bigger picture. It doesn't mean that you have to change what you're doing, but appreciate that other perspective, and try to make a place for it.

Emma Sieminski:

Wow, that's a really good answer. Thank you so much for talking with me today. It was an absolute pleasure to talk to you about your absolutely fascinating work. And I can't wait to see what you do next. So thank you.

Jen Wagner:

Thanks for having me.

[MUSICAL INTERLUDE]

Mark Shriver:

Tracking Traits is a production of Penn State’s Center for Human Evolution and Diversity. Our producer, audio engineer and musical theme composer is Cole Hons, and our logo was designed by Michael Tribone of mtribone design. 

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