On Tech Ethics Podcast – Citizen or Participatory Science Ethics

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1. Introduction of Guest (00:00:03) Host introduces Lisa Rasmussen, highlighting her background and expertise in research ethics and citizen science.
2. Defining Citizen Science (00:02:13) Discussion on what citizen or participatory science entails and its inclusive nature.
3. Who Can Participate? (00:04:09) Exploration of the accessibility of participatory science projects for individuals without formal training.
4. Examples of Citizen Science Projects (00:05:25) Overview of various citizen science projects, ranging from data collection to environmental monitoring.
5. Benefits of Participatory Science (00:08:32) Explanation of the advantages for researchers, including broader data collection and community engagement.
6. Key Ethical Issues (00:11:40) Discussion on ethical considerations unique to participatory science compared to traditional research.
7. Existing Regulations and Ethics (00:12:09) Analysis of how current research regulations address or overlook ethical issues in citizen science.
8. Recommendations for Resources (00:17:31) Suggestions for further reading and resources to learn more about participatory science and its ethics.
9. Final Thoughts and Encouragement (00:18:50) Encouragement to engage in citizen science projects and involve the community, including children.

Daniel Smith: Welcome to On Tech Ethics with CITI Program. Our guest today is Lisa Rasmussen, who is a professor in the Department of Philosophy at the University of North Carolina Charlotte, an editor-in-chief of the journal Accountability in Research. Lisa has been a principal investigator or co-principal investigator on over $1 million in National Science Foundation Awards and serves as a co-editor of the book series, Philosophy and Medicine and an associate editor of the publication Citizen Science: Theory and Practice. Today, we are going to discuss citizen or participatory science, including its benefits and key ethical issues. Before we get started, I want to quickly note that this podcast is for educational purposes only. It is not designed to provide legal advice or legal guidance. You should consult with your organization’s attorneys if you have questions or concerns about the relevant laws and regulations that may be discussed in this podcast. In addition, the views expressed in this podcast are solely those of our guests. On that note, welcome to the podcast, Lisa.

Lisa Rasmussen: Thanks for having me.

Daniel Smith: So just to get started, I gave you a very brief introduction, but can you tell us more about yourself and your work at UNC Charlotte?

Lisa Rasmussen: Sure. I am, as you said, a professor of philosophy, and there aren’t very many of us doing philosophy and citizen science that I’ve encountered. But the crossover for me is in the area of research ethics, which I teach at the graduate level, the standard responsible conduct of research course and the work that I do in the journal. The journal focuses on research ethics and integrity and accountability. And in working on this area, I started to learn more about these areas of research outside of our conventional medical school and university contexts that’s being done in places we don’t know about, like citizen science. And I’ve started to think a lot more recently about unregulated research in particular and how to think about the ethics of that.

Daniel Smith: So just as level setting, can you define what is citizen or participatory science?

Lisa Rasmussen: Sure. It is a pretty large umbrella term given to research, scientific research, science, goes by a lot of terms in which people collaborate who may not be part of the conventional research institution. So what this looks like is people contributing data from an app on their phone or going out and counting the number of worms or birds in their local habitat or measuring a stream flow and things like that. And they can be background data contributors. The app is contributing data and you’re not even aware of it all the way up to helping to lead a research project or even define the research question in collaboration with others. And the reason that it started to be called citizen science was to distinguish it as something that all people could join, not just trained and pedigreed scientists. But at least in the United States, the term citizen has become somewhat controversial because it might imply some exclusionary norms preventing people who aren’t citizens of a country from participating in science. So participatory science is a newer term that hopefully makes it much more inclusive.

Daniel Smith: You alluded to this and you mentioned how participatory science, the premise of it is that anybody can be involved. But can you talk some more about who can be a participatory scientist? Do people need to have any formal education or training to take part in participatory science projects?

Lisa Rasmussen: No. In general. There are some projects where you might need to have a certain equipment or a certain ability. For example, if you’re tracking out in a remote place, you need to be able to hike out there. But in general, there’s no check on what kinds of training you have to have to be a participant. It’s open to pretty much anyone who can access a particular project. And I’m referring to particular projects because they really do vary quite a bit. And so just to give you an example, if you have the app called iNat or iNaturalist on your phone to take pictures of birds and things in your environment to identify them in the background that data is made accessible to researchers. So you might be a participatory scientist already without even knowing it. But if you want to join something much more focused, for example, you might need to live in a certain area.

Daniel Smith: Certainly. So you just provided one example of a participatory science project. Can you talk a bit more about the range of other projects that are out there and what this might look like in other contexts?

Lisa Rasmussen: Sure. I think I’ll break it down into a couple of general categories. So one is a more easy contributory style participation and research, by which I mean you contribute data and it goes to some central organizing place where they’re defining the research question and making sense of the data and reporting on it, and you’re just contributing data. So iNat or iNaturalist is one of those examples. There’s another one that’s a little bit more active called the Collaborative Community Rain, Hail and Snow Network. And for this one, this is an example of something needing equipment, for example. So you can buy from the group a rain and snow gauge and put it in your yard somewhere or outside on your balcony. And the contribution you make is by measuring the actual precipitation in your area. And the goal here is to get much more refined data on precipitation than the official rain gauges of the airport or town hall or whatever it happens to be. So that requires a little bit more. And there are people, for example, who will go out every day and check their rain gauge.

There’s another batch of projects that I think are more unique to a local context and fairly geographically centralized. So for example, you might join a project where you are sampling air or water quality in your neighborhood or checking a stream level or trying to identify and even remove invasive species, things like that. There’s even an app called Project Roadkill where you can map roadkill as you’re driving around. So obviously most of the time you’re going to be driving locally, but sometimes if you’re driving a further distance and you map your roadkill, that data goes in to do things like identify where most of these accidents are happening. And then the third one is I guess more cause or interest specific. So if you or a loved one has some kind of a rare condition, you might be interested in trying to map either symptoms of that or potential causes or things like that. You might also be interested in something like looking at pictures of galaxies. So you can go to Galaxy Zoo and look at those pictures and try and identify different kinds of galaxies that were taken by space telescopes or there’s a very popular one focused on Alzheimer’s disease called Stall Catchers where you can play games that actually help researchers do work towards Alzheimer’s.

Daniel Smith: That’s all really interesting. From a scientific perspective, what are some of the benefits of participatory science? Are there things that researchers gain from this type of science project that they wouldn’t gain from a traditional type of study?

Lisa Rasmussen: Yes. Absolutely. I think one of the most significant ways that happens is just the scale that’s possible when you open up your research to broader participation. One of the ways this field started is with bird counts. And so as you know, there are people who are really interested in birding and when they can take the data they’re gathering for their own personal hobby and help science that makes them feel really good about what they’re doing. They get both their personal benefit and they know that they’re helping with science. Actually, there was a study that came out in the last few years where people in the UK were counting bugs squished on license plates on cars, and they were able to compare it year over year and find the incident of a significant drop in the number of bugs on license plates, which corresponded to death of insects in general. So they were able to identify this with crowd help in a way that they couldn’t have just on their own.

You can also help your cause or your location, you can help improve the air water quality in your area. You can hopefully help advance the field of Alzheimer’s research or physics, astronomy in Galaxy Zoo, things like that so you actually can have a meaningful contribution. And then there’s this more personal benefit of just learning more people who study galaxies who maybe didn’t know very much of them, become much more informed about the different shapes and sizes and colors of galaxies, for example. And then there’s this other way in which they think they can be really beneficial, which maybe we’re only starting to realize in recent years, which is when you ask people what they want to know, they identify different questions frequently than what researchers identify. And that’s not to say that either is wrong, but each of them sees the important research priorities from their own perspective. And so the citizen science contribution can be, Hey, we need to be looking more at this question, or we need to be looking at this question in this way, which can be really helpful for science.

Ed Butch: I hope you are enjoying this episode of On Tech Ethics. If you’re interested in important and diverse topics, the latest trends in the ever-changing landscape of universities, join me, Ed Butch for CITI Program’s, original podcast, On Campus, new episodes released monthly. Now, back to your episode.

Daniel Smith: Now with this broadening of participation in the scientific process and the different types of projects that you were talking about, I’m sure there’s certain ethical issues that we should all be aware of. So can you talk a bit about the key ethical issues in participatory science and then in addition to that, how well do our existing research regulations and other forms of governance address those ethical issues?

Lisa Rasmussen: Sure, and I think especially for people who are on the CITI podcast, the regulations are a really important framework for thinking about ethical issues and research. But they’re not the only possible ethical issues. I don’t think anybody claims that they are, but there’s a way in which the regulations focus our brains on certain things. So we think about human subjects and animal subjects and risk benefit analysis and things like that. But of course there’s all kinds of other stuff we should be thinking about in research. One of the things I like about researching in this area is that the ethical issues in citizen science can be pretty different in some cases from conventional research or traditional research. So for example, when we think about people involved in research in the traditional framework, we often immediately think of them as human subjects of research. But in citizen science … And there is citizen science in health research. And when they are participating in research with university researchers, they are going to have to go through the IRB to get permission and things like that and will have to still treat human subjects appropriately. But in addition, in other areas of citizen science, there are other priorities of ethical issues that we should think about.

So for example, the nature of collaboration in citizen science can be pretty different from traditional research in which the researcher drives the agenda, they tell you what to do and you just get your sample taken or something. But in citizen science, the lay participants might be co-researchers and the co-researchers might each have a different agenda of what the research is supposed to accomplish. And when that’s not clear, there can be tension and even ethical issues that come up. There are issues of labor and compensation in citizen science as well. So for example, when we think about human subjects, we think about compensating them enough so that it removes a disincentive, but we’re not coercing them or exploiting them somehow by giving them money to participate in research.

But in some citizen science, when we’re asking a lot of people who are collaborating with us and they could be spending their time making money, making a living, or they’re not getting any benefit from this research, then we have to start thinking about whether in some cases they ought to be paid for the labor that they’re doing. And in particular, what sometimes citizen scientists will cite is that the university researchers will take the data, publish it, get grants, get promotions, have publicity based on their findings, but all of that work was made possible by the citizen scientists who are helping them collect that data and they ought to be able to get something out of their participation as well and not be exploited.

Another issue is things like animal and animal use or ecosystem mapping. So we think about things in traditional research in terms of are we treating our mice appropriately in the lab in the vivarium, but in citizen science, it might be are we blurring our data so that when we track exotic species, endangered species, we’re not actually giving poachers the location of an endangered species they could go and collect? So that’s just not something that’s usually thought about in conventional regulations.

And then one more thing I’ll just mention is there’s been a long discussion about return of results in health research in particular, which is the question of whether when you’re looking for one thing but you find something else, are you obligated to tell the participant about that something else that you found? And there’s a settled position on that now, I think. But the way that this shows up in citizen science is different, and that is when citizen scientists participate in research, they’re doing it because they’re actually interested in the answer. And they would like to know, how does this turn out? When you study my air in my neighborhood, I need to know what you found. Did you find that it was worse or better than everyone else’s or then we thought or than it used to be? Is my contribution to your research on diseases actually helping and has it led to something clinical? So report backs are ways in which we honor our ethical obligation to share the results of research with the people who make it possible. And that’s not something we generally think about in terms of research regulations.

So in general, the interesting thing about citizen science is sometimes it’s covered by regulations and sometimes it’s not. And when it’s covered, it’s sometimes covers it in a strange way and misses the main obligations that the citizen scientists themselves are seeing in favor of a conventional research framework.

Daniel Smith: Now, I know you could elaborate on a lot of those ethical issues much more, but for the purpose of this podcast, do you have any recommendations for additional resources where listeners can learn more about participatory science and those ethical issues that you just mentioned?

Lisa Rasmussen: Sure. There is an association, it’s called the Association for the Advancement of Participatory Science. So their website is a great place to go and learn more about the field and please join the membership. That would be great. And you can go to the conference. The annual conference. There’s a journal that’s open access, freely available called Citizen Science: Theory and Practice. And there have been two special collections in that journal on ethical issues in citizen science. And then more broadly, my colleague Karen Cooper has written a book called Citizen Science, and I highly recommend that as a good basic introduction to the field and what it’s capable of. And if you want to participate in citizen science, there’s a great website called SciStarter. And you can choose from thousands of different projects that are listed on that website and you can contribute. You can dial up your location the way that you want to participate, the cause you want to contribute to, et cetera, and find some projects that are right for you.

Daniel Smith: Excellent. And I’ll certainly include links to those resources in our show notes so that our listeners can check them out. And on that note, do you have any final thoughts that we have not already touched on?

Lisa Rasmussen: No. Just the encouragement to go try it. I participated in a local event this summer on heat mapping where I drove around in my car with a funny looking instrument on the window to sample heat and humidity in a section of my neighborhood. And all that data goes into a centralized location and they’re going to make a heat map of my city. So it’s great to see how various zip codes and trees and other things affect who’s experiencing heat more than other people. And I think it’s a great way to involve the kids too. I think knowing they’re contributing to science in some of these projects might be a really fun way for them to get out, enjoy a park, a museum, something like that.

Daniel Smith: Absolutely. And I think I’ll have to head over to SciStarter myself to get involved. So I think that is a wonderful place to leave our conversation for today. So thank you again, Lisa.

Lisa Rasmussen: Thank you so much for having me.

Daniel Smith: And I also invite everyone to visit citiprogram.org to learn more about our courses, webinars, and other podcasts. Of note, you may be interested in our Responsible Conduct of Research courses, which cover the core norms, principles, regulations, and rules governing the practice of research. And with that, I look forward to bringing you all more conversations on all things tech ethics.