At ScienceOnline Together later this week, Holly Menninger will be moderating a session on "Ethics, Genomics, and Public Involvement in Science".
Because the ethical (and epistemic) dimensions of "citizen science" have been on my mind for a while now, in this post I share some very broad, pre-conference thoughts on the subject.
Ethics is a question of how we share a world with each other. Some of this is straightforward and short-term, but sometimes engaging each other ethically means taking account of long-range consequences, including possible consequences that may be difficult to foresee unless we really work to think through the possibilities ahead of time -- and unless this thinking through of possibilities is informed by knowledge of some of the technologies involved and of history of what kinds of unforeseen outcomes have led to ethical problems before.
Ethics is more than merely meeting your current legal and regulatory requirements. Anyone taking that kind of minimalist approach to ethics is gunning to be a case study in an applied ethics class (probably within mere weeks of becoming a headline in a major news outlet).
With that said, if you're running a project you'd describe as "citizen science" or as cultivating public involvement in science, here are some big questions I think you should be asking from the start:
1. What's in it for the scientists?
Why are you involving members of the public in your project?
Are they in the field collecting observations that you wouldn't have otherwise, or on their smart phones categorizing the mountains of data you've already collected? In these cases, the non-experts are providing labor you need for vital non-automatable tasks.
Are they sending in their biological samples (saliva, cheek swab, belly button swab, etc.)? In these cases, the non-experts are serving as human subjects, expanding the pool of samples in your study.
In both of these cases, scientists have ethical obligations to the non-scientists they are involving in their projects, although the ethical obligations are likely to be importantly different. In any case where a project involves humans as sources of biological samples, researchers ought to be consulting an Institutional Review Board, at least informally, before the project is initiated (which includes the start of anything that looks like advertising for volunteers who will provide their samples).
If volunteers are providing survey responses or interviews instead of vials of spit, there's a chance they're still acting as human subjects. Consult an IRB in the planning stages to be sure. (If your project is properly exempt from IRB oversight, there's no better way to show it than an exemption letter from an IRB.)
If volunteers are providing biological samples from their pets or reports of observations of animals in the field (especially in fragile habitats), researchers ought to be consulting an Institutional Animal Care and Use Committee, at least informally, before the project is initiated. Again, it's possible that what you'll discover in this consultation is that the proposed research is exempt from IACUC oversight, but you want a letter from an IACUC to that effect.
Note that IRBs and IACUCs don't exist primarily to make researchers' lives hard! Rather, they exist to help researchers identify their ethical obligations to the humans and animals who serve as subjects of their studies, and to help find ways to conduct that research in ways that honor those obligations. A big reason to involve committees in thinking through the ethical dimensions of the research is that it's hard for researchers to be objective in thinking through these questions about their own projects.
If you're involving non-experts in your project in some other way, what are they contributing to the project? Are you involving them so you can check off the "broader impacts" box on your grant application, or is there some concrete way that involving members of the public is contributing to your knowledge-building? If the latter, think hard about what kinds of obligations might flow from that contribution.
2. What's in it for the non-scientists/non-experts/members of the public involved in the project?
Why would members of the public want to participate in your project? What could they expect to get from such participation?
Maybe they enjoy being outdoors counting birds (and would be doing so even if they weren't participating in the project), or looking at pictures of galaxies from space telescopes. Maybe they are curious about what's in their genome or what's in their belly-button. Maybe they want to help scientists build new knowledge enough to participate in some of the grunt-work required for that knowledge-building. Maybe they want to understand how that grunt-work fits into the knowledge-building scientists do.
It's important to understand what the folks whose help you're enlisting think they're signing on for. Otherwise, they may be expecting something from the experience that you can't give them. The best way to find out what potential participants are looking for from the experience is to ask them.
Don't offer potential diagnostic benefits from participation in a project for which that information is a long, long way off. Don't promise that tracking the health of streams by screening for the presence of different kinds of bugs will be tons of fun without being clear about the conditions your volunteers will undergo to perform those screenings.
Don't promise participants that they will be getting a feel for what it's like to "do science" if, in fact, they are really just providing a sample rather than being part of the analysis or interpretation of that sample.
Don't promise them that they will be involved in hypothesis-formation or conclusion-drawing if really you are treating them as fancy measuring devices.
3. What's the relationship between the scientists and the non-scientists in this project? What consequences will this have for relationships between scientists and the pubic more generally?
There's a big difference in involving members of the public in your project because it will be enriching for them personally and involving them in your project because it's the only conceivable way to build a particular piece of knowledge you're trying to build.
Being clear about the relationship upfront -- here's why we need you, here's what you can expect in return (both the potential benefits of participation and the potential risks) -- is the best way to make sure everyone's interests are well-served by the partnership and that no one is being deceived.
Things can get complicated, though, when you pull the focus back from how participants are involved in building the knowledge and consider how that knowledge might be used.
Will the new knowledge primarily benefit the scientists leading the project, adding publications to their CVs and helping them make the case for funding for further projects? Could the new knowledge contribute to our understanding (of ecosystems, or human health, for example) in ways that will drive useful interventions? Will those interventions be driven by policy-makers or commercial interests? Will the scientists be a part of this discussion of how the knowledge gets used? Will the members of the public (either those who participated in the project or members of the public more generally) be a part of this discussion -- and will their views be taken seriously?
To the extent that participating in citizen science project, whatever shape that participation may take, can influence non-scientists' views on science and the scientific community as a whole, the interactions between scientists and volunteers in and around these projects are hugely important. They are an opportunity for people with different interests, different levels of expertise, different values, to find common ground while working together to achieve a shared goal -- to communicate honestly, deal with each other fairly, and take each other seriously.
More such ethical engagement between scientists and publics would be a good thing.
But the flip-side is that engagements between scientists and publics that aren't as honest or respectful as they should be may have serious negative impacts beyond the particular participants in a given citizen science project. They may make healthy engagement, trust, and accountability harder for scientists and publics across the board.
In other words, working hard to do it right is pretty important.
I may have more to say about this after the conference. In the meantime, you can add your questions or comments to the session discussion forum.