Interrupting pathways to health inequities in citizen science health research

Participatory research in multiple forms is rapidly gaining ground and stands to provide valuable benefits in the area of health research. Citizen science, an increasingly popular form of participatory research, aims to involve laypersons in knowledge production and, as such, can offer new insights that may not be readily accessible by the traditional scientific research enterprise. Heralded as an advance in the democratization of science, citizen science stands as a potential player in evidence generation. Yet, while citizen science offers advantages through its emphasis on lay participation in uncovering information likely to be pertinent to improving health outcomes, without deliberate attention to pathways to inequity and oversight, some aspects can operate to perpetuate or exacerbate health inequities. Drawing on health disparities literature to assist in identifying possible pathways, this work aims to provide support for greater attention to 'process', which would include active engagement with intersecting inequities as a way of interrupting pathways to health inequity. If citizen science is to be true to its moniker, it cannot be 'equity-neutral' in a society where structural or systemic inequities are present. It must be equity-promoting. In the health context, the concerns of justice evolve into concerns of differential health impacts. To accomplish this, equity and justice, as well as representation and fair process, become critically important. Accordingly, this paper foregrounds proactive commitment to equity by confronting the reality of social inequalities present in a given society and adapting the project accordingly to minimize downstream health inequities. Lay Summary Participatory research in multiple forms is rapidly gaining ground and stands to provide valuable benefits in the area of health research. Citizen science, a form of participatory research, aims to involve laypersons in contributing to scientific knowledge. This can offer new insights that may be more difficult for the traditional scientific research institutions. Many see citizen science as an advance in the democratization of science. That is, it is a form of 'science by the people' rather than the exclusive domain of highly trained researchers. Research conducted by citizen scientists may uncover information that can help improve health outcomes, but without adequate attention to process and oversight, some aspects can operate to perpetuate or compound health inequities. This work aims to provide support for engaging with background inequities within a society and using that awareness to inform the planning, design and execution of citizen science projects. To avoid unjust outcomes in which people receive different advantages, health research needs to be conducted in an 'equity-promoting' manner. Citizen science must elevate the importance of 'process' and take a proactive and deliberate approach to investigating social inequalities present in society that may intersect with the project, and adapt the project accordingly.