Conceptual and Ethical Considerations for Citizen Science in Biomedicine

Abstract

Patients and healthy citizens are taking part in biomedical research in unprecedented numbers and ways. While the lion’s share of participation occurs in a ‘traditional’ manner where individuals volunteer to be researched, people without professional training are also increasingly contributing to scientific knowledge production as so-called citizen scientists. In many projects, lay participants share decision-making power with professional researchers, jointly setting the research agenda, planing the study, acquiring funding, and selecting the methodology. In some instances projects are led exclusively by ‘lay’ people who carry out data collection and analyses, and disseminate the results. Despite their diversity, all of these practices are often subsumed under the label of ‘citizen science’. While enthusiasm for citizen science is growing, substantive ethical and political analyses of this phenomenon are still scarce. Differentiating among citizen science initiatives according to the main type of task that citizen scientists are expected to contribute, we provide a taxonomy to distinguish between different strands of participatory practices. As citizen science of medicine continues to develop, we predict that self-policing practices of stakeholders are likely to play an increasingly important role. We close by discussing emerging ethical considerations around these initiatives.