Citizen Science Projects Surging, But Often Lack IRB Ethical Oversight
IRBs are responsible for ethical oversight of clinical trials, but this generally does not apply to “citizen science,” which involves the participation of lay individuals in scientific studies. “Citizen science is really just a different approach to research, where we are engaging participants in, typically, pretty meaningful ways. That raises issues that traditional research frameworks may not adequately address,” says Christi Guerrini, JD, MPH, assistant professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine.
More than 60 ethical issues related to citizen science were identified by stakeholders who participated in a 2017 workshop funded by the National Science Foundation.1 “Many ethical issues were identified that perhaps are unique to citizen science, or are well-known in research, but are presented differently in the citizen science context,” says Guerrini, a participant in the workshop.
However, it was unclear which of those ethical issues should be prioritized for further study and problem-solving. “There are limited resources for citizen science leaders and practitioners to start tackling issues. It’s not quite clear ... what we should be focusing on first,” Guerrini says.
Guerrini and colleagues picked up where the workshop left off by prioritizing all the identified ethical issues. They surveyed 108 practitioners, participants, and scholars in citizen science on the most and least concerning ethical issues.2 To make the survey manageable, participants were asked to rate just 11 of the ethical issues.
“Importantly, we only selected ethical issues that could apply to any kind of citizen science project. There are some that are very concerning to specific kinds of projects, but are not at all relevant to others,” Guerrini explains.
For example, bodily autonomy is relevant specifically to human health research, so it was not included in the survey. Based on the responses, researchers classified participants into two groups:
“Power to the People.” This group was concerned mostly about issues involving power imbalances between participants and project leaders, exploitation of participants, and lack of diversity among participants.
“Show me the Data.” This group was focused mainly on data-related ethical issues — most commonly, quality of data and failure to share data.
Overall, four ethical issues were identified as most concerning: failure to return results, exploitation of participants, poor quality data, and power imbalance. “One takeaway for researchers engaged in citizen science is to pay attention to issues of power and exploitation, and to think about what processes they might use to get ahead of those concerns,” Guerrini suggests.
Whether citizen science projects receive IRB oversight depends on whether they are covered by the Common Rule requirements for human subjects research. While much citizen science research is not subject to IRB review, some projects are conducted in conjunction with university or nonprofit staff who are subject to the Common Rule requirements. “They could also, if they have the budget, opt for review with a private IRB,” adds Lisa M. Rasmussen, PhD, organizer of the 2017 workshop.
Guerrini would like IRBs to pay attention to the fact citizen science projects are styled differently from traditional study protocols. Mainly, this comes up in terms of the involvement and engagement of citizen scientists. “Some citizen science might involve ‘traditional’ research subjects, in the sense that they are subject to an intervention. Some might not,” Guerrini says.
Adding to the complexity, in some projects, citizen scientists are both collecting and analyzing data. When individuals are actually handling the work of researchers, they are not really “human subjects” as defined by IRBs. “It raises a number of questions about protections and risks and benefits,” Guerrini says. For IRBs, the challenge is to ask the right questions. “IRBs absolutely need to do their work in terms of upholding regulatory requirements. The work of IRBs still needs to be conducted very rigorously,” Guerrini says. “I would hope that IRBs [remain] willing to ask more questions in order to better understand the citizen science projects.”
When it comes to citizen science, how is “human subject” defined? If someone takes a photo of a bird and uploads it, that is not what researchers typically would consider a “human subject.”
“But if their location information is included in the uploaded photo — particularly if, for example, they took a photo at their home — that seems to fall under the purview of the Common Rule,” notes Rasmussen, professor of philosophy at UNC Charlotte and co-author of a paper on ethics and citizen science.3
Another issue is IRBs usually take an equality approach with participant compensation (i.e., equal pay for equal work). “But for a variety of reasons in citizen science, an equity approach ... might be more ethical,” Rasmussen says.
IRBs often are highly focused on protecting autonomy of human research subjects. This might not apply to citizen science research. “Maybe protecting citizen scientists from harm of privacy breach, a typical IRB worry, is a non-issue,” Rasmussen says.
On the other hand, an IRB might not reflect at all about whether citizen scientists are treated as equals because that is not their mandate. “In other words, the ethical worries of IRBs and citizen science may not always match up,” Rasmussen says.
IRBs must understand citizen science better in many cases, according to Rasmussen. “The strict letter of the regulations may not be keeping up with the moral principles actually operating in these areas,” she says. “IRBs should not be so dedicated to regulatory compliance that they fail to notice ethical issues in citizen science.”
IRB members must consider all these issues, since IRBs will be seeing more citizen science projects. “This style of research has become very popular,” Guerrini says. “There is no question that citizen science is not a fad. It is here to stay.”
REFERENCES
- Rasmussen LM. Filling the ‘ethics gap’ in citizen science research: A workshop report. July 2017.
- Guerrini CJ, Crossnohere NL, Rasmussen L, Bridges JFP. A best-worst scaling experiment to prioritize concern about ethical issues in citizen science reveals heterogeneity on people-level v. data-level issues. Sci Rep 2021;11:19119.
- Rasmussen LM, Cooper C. Citizen science ethics. Citiz Sci 2019;4:5.
Failure to return results, exploitation of participants, poor quality data, and power imbalance are top ethical worries. Citizen scientists should pay attention to issues of power and exploitation, and think about what processes to use to stay ahead of those concerns.
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