For Marginalized Groups, Being Studied Can Be a Burden
Cindy Peltier, an associate professor and chair of indigenous education at Nipissing University, refers to this as “helicopter research.” “Folks would come in and take information and then publish whatever they wanted without ever consulting the community,” she says. “People had the notion that indigenous peoples were this captive audience.” (These issues are still very relevant today: Currently, tribal nations in the US are declining to participate in a National Institutes of Health-led DNA collection program due to concerns about control of their genetic data.)
Research that is meaningless for its subjects is liable to induce fatigue—especially if the volume of research is high and the number of potential participants is small. As a result, minority communities are particularly vulnerable. So it’s not only trans and indigenous study participants, but also rural residents, people with rare diseases, and refugees, among others, who grow tired of repeatedly serving as guinea pigs for high-minded academic studies. “Research fatigue is an issue in any kind of place where the scope of public interest outmatches the capacity of local actors to respond to it,” says Julia Haggerty, an associate professor of geography at Montana State University who studies the effect of energy development on rural towns.
There are, of course, plenty of good reasons to want to build knowledge about marginalized communities. Medical researchers hope to develop cures and treatments for rare diseases; sociologists and anthropologists may intend that their work be used to enhance public knowledge about groups that receive little attention, or to develop just policies. But this last goal, in particular, is not always realistic. “With marginalized groups, there’s lots of public interest in policy practice, and academic researchers then fly in and think they’re going to solve these problems. And then nothing happens and nothing changes for those people,” says Tom Clark, a professor of sociology at the University of Sheffield who wrote an influential early paper on research fatigue. “Actually getting [research] into policy and practice is incredibly difficult.” A profusion of studies just sits on shelves without ever influencing the outside world—what Clark calls “the research saturation of society.”
Clark and others agree that, to avoid research fatigue, academics must consider the desires and needs of the people they are studying. One approach is participatory action research, in which community members are trained to take part in the research process—not as subjects, but as researchers themselves. To truly benefit the community, Peltier believes, these collaborators can’t just collect and analyze data or help present the final results. “Any participatory research, or research that calls itself participatory, should include discussions with the community right from the very beginning of conceptualizing what the research will look like,” she says.
When Peltier’s students work with indigenous communities, she encourages them to assemble not only an academic committee, but also a group of advisers from that community who can help guide their research from the get-go. With buy-in from the community, this approach works well, she says. “Indigenous peoples deserve far more than a chair at the decisionmaking table,” says Peltier, who herself has ties to both the Nipissing First Nation and the Wiikwemkoong Unceded Territory. “I think they need to be the deciders of what research looks like and what it’s designed to accomplish.”
But this level of engagement might not always be feasible. “Not all engagements with communities need to look the same way,” Haggerty says. “And researchers don’t need to promise to deliver something that they’re not going to deliver. But what we want is for researchers to at least take the step of thinking that through.”