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A growing number of individuals who are not professional scientists are working with professional scientists to contribute to scientific research through a broad spectrum of volunteer activities and roles. To guide the regulatory oversight of scientists carrying out citizen science projects, we draw distinctions among five categories of projects in which volunteer activities and roles vary based on the combination of setting (institutional or not), subject matter (human or not), and the norms and expectations of handling volunteers’ personally identifiable information. Each category has potentially different ethical considerations and forms of institutional (or regulatory) oversight. We identify and assign numeric labels to these categories rather than names to avoid confusion and value-laden connotations regarding terminology. We hope the absence of terminology will initiate conversations and encourage rapid evolution of necessary vocabulary in this area. We focus on Type 4 research, projects led in academia and in which volunteers are not the subject of the research, but provide personally identifiable information with expectations of non-confidentiality. Our preliminary data show that current Type 4 projects generally lack informed consent, and most do not provide details about their handling of personally identifiable data. We identify areas where federal guidelines, as well as existing institutional ethics review protocols for protection of human subjects in research, might be applied to some forms of citizen science in ways that could either support, or inadvertently undermine, the Common Rule (the US regulation regarding protection of human subjects). We illustrate these areas with examples of projects from Cooper’s lab. By highlighting the complex and distinct challenges of responsible conduct with each project type, we urge professional scientists, citizen scientists, regulators, and other stakeholders to jointly determine the type of institutional oversight that will best mitigate risks without stymying innovation and benefits. We hope that this essay will spark a lively discussion and refinement of concepts, research, and improved practices.
Cooper et al. (Fri,) studied this question.