Exploring bioethical issues in the use of f citizen science in environmental health research

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The accelerated participation of citizen science (CS) in biomedical research has raised many important bioethical questions as new technologies empower citizens to collect, analyze and share data. Participation in the research process allows communities to acquire the ability to influence the direction of biomedical research by making their own contributions to the scientific process including becoming co-creators of research data. To date, many of the bioethical questions specific to use of CS have been understudied and Institutional Review Boards (IRBs), many of which are reviewing CS projects for the first time, struggle with their review approach and how specifically to apply the Common Rule regulatory framework. This supplemental project to R01 ES027890 “Safe and Just Cleaners: Reducing Exposure to Toxic Cleaning Chemical Products Among Low Wage Immigrant Latino Community Members” will build on our current community based participatory research process to explore the bioethical issues of risk, autonomy, beneficence, and justice in the roles of the CS participants as contributors to the scientific process. We will systematically gather longitudinal qualitative data before, during and following implementation of CS research activities of our parent project about the bioethical challenges during the process of co-creation of environmental health research both from the perspective of the academic and community-based research partners and the engaged CS participants. We will also collect input from members of a consortium of biomedical institutional review boards (IRBs) in the New York City metropolitan area regarding their experience reviewing and approving CS research activities. The research data we collect through this project will also contribute to the project’s development of informational guidance to improve capacity for researchers and Institutional Review Board members and staff regarding the ethical conduct and efficient review of CS in biomedical research more broadly. This data will inform the development of informational guidance distributed through papers, presentations and a webinar to assist IRBs and researchers in designing and reviewing the ethical conduct of CS research, with a focus on environmental health research. This research contributes to theme 2 of NIEHS strategic plan, since improving how research addresses the bioethical concerns in CS will help inform how to best promote effective outreach, communication and engagement of communities in translating data to knowledge and to action.