"We're not going to be guinea pigs;" Citizen Science and Environmental Health in a Native American Community

Abstract

Determined to learn the extent to which a local contaminated site was impacting community health, the Native American community of Akwesasne reached out to a research university, eventually partnering on the first large-scale environmental health community based participatory research project (CBPR). Based on interviews with scientists, community fieldworkers, and study participants, this article examines the ways in which collaborating on these studies was beneficial for all parties — especially in the context of citizen science goals of education and capacity building — as well as the challenges they faced, including communicating the limits of what scientific studies could accomplish for the community.

Environmental chemicals and public sociology: engaged scholarship on highly fluorinated compounds

“…CBPR projects are typically local in scale and focused on identifiable geographic and/or cultural communities, such as residents in a contaminated community or members of a Native American tribe (Hoover 2016). Unlike public sociology, which is often normatively agnostic, CBPR typically has the express goal of providing research to improve public and environmental health, often with an explicit focus on environmental justice issues (Hoover 2016;O'Fallon and Dearry 2002, 158). Although CBPR can be challenging in terms of divergent goals, timelines, control over data, and communication (Minkler 2005), its benefits for communities include information sharing, training and research experience, monetary benefits from research expenditures and employment, empowerment, and an understanding of environmental health issues that facilitates greater engagement in future policy and scientific processes.…”

“…Although CBPR can be challenging in terms of divergent goals, timelines, control over data, and communication (Minkler 2005), its benefits for communities include information sharing, training and research experience, monetary benefits from research expenditures and employment, empowerment, and an understanding of environmental health issues that facilitates greater engagement in future policy and scientific processes. CBPR also has significant benefits for researchers, including potential partnerships with restricted or reluctant communities, improved recruitment of research participants, improved quality of data collected, and increased research capacity for future projects Hoover 2016;Morello-Frosch et al 2011).…”

Participatory Research for Environmental Justice: A Critical Interpretive Synthesis

“…In case studies resulting in structural change (n = 26), 16 represented research-action partnerships spanning more than 4 y, with some still ongoing (Table 2), and acknowledge an average of two funding sources per study (Excel Table S2). Notable examples of community-academic partnerships spanning over a decade include the Detroit Community-Academic Urban Research Center (Coombe et al 2017; detroiturc.org); Low Country Alliance for Model Communities with the University of Maryland (Wilson et al 2014, lamcnc.org); West End Revitalization Association and researchers at the University of North Carolina (Heaney et al 2007(Heaney et al , 2011Wilson et al 2007); the Akwesasne Mohawk Nation and University at Albany, State University of New York (Hoover 2016(Hoover , 2017Ravenscroft et al 2015;Schell et al 2005); and the University of Texas Medical Branch and EJ communities in Houston, Texas (Pettibone et al 2014;Sullivan and Lloyd 2006;Sullivan 2019;Sullivan et al 2008). Despite the often-cited constraint of research grant funding cycles (e.g., Crowe et al 2008), these partnerships manage to leverage various means of support through different partners applying for grants.…”

Public participation, trust and data sharing: gardens as hubs for citizen science and environmental health literacy efforts

“…Following the framework of Emmet and Desai (2010), the team reported the data as soon as they were comfortable doing so, but due to a laboratory closure, this was later than anticipated. Participants have wanted their results quickly and within a relevant timeframe, so that they may change their behavior accordingly (Hoover, 2016). These limitations likely impacted attendance to the data sharing events, which then greatly impacted the sample size for survey and interviewee responses, which was much smaller than anticipated.…”