01.06.2021 07:00 AM

For Marginalized Groups, Being Studied Can Be a Burden

Academics often research minority communities in the hope of helping them. But too much time under the microscope can cause its own harms.

cones facing a yellow ball — Photograph: Eugene Mymrin/Getty Images

Back in 2009, when the Great Recession was still in full swing and Lady Gaga’s first album was the soundtrack du jour, a pseudonymous LiveJournal user made a post titled “Fuck You and Fuck Your Fucking Thesis.” Using the cheeky moniker Anne Tagonist, the author, a trans woman, declared her refusal to participate in academic research. “What do you think you’re going to do for me? For us? For trans women? Do you think it makes a difference if you study the menstruation needs of trans guys?” she asked, aiming her rhetorical questions at a theoretical graduate student researcher. “Would that change my life? Would that change anyone’s life?”

A decade later, these words still ring true for Florence Ashley, a doctoral student in law at the University of Toronto who cited the post in an article they published in November in the journal Bioethics. In the article, Ashley discusses the idea of research fatigue, which they described in a recent interview with WIRED as occupational burnout for study subjects. “It’s the fact that you’re being overworked,” Ashley says. “It’s also the sense that you’re not contributing to anything of worth. It’s a negative psychological and emotional state in and of itself.”

As a member of the trans community, Ashley has experienced research fatigue themselves. Though they note that being an academic gives them a degree of privilege and a protective understanding of the research process, they have still at times found themselves reluctant to participate in otherwise interesting studies. “From my perspective, it’s seeing really cool research and just getting filled with this anxiety of, ‘I should do it.’ But I feel so bloody tired of the whole research thing that I just don’t,” Ashley says. Others who feel exhausted may start participating in a study but then fail to complete it—especially if it uses outdated or disrespectful language or does not reflect the needs of their community.

Research fatigue, then, isn’t only an ethical problem—it also interferes with the projects themselves, because burnt-out subjects are less likely to assist with future studies. And if minority groups are tired of participating, they may become increasingly marginalized within academic work. “It’s preventing future research, but also preventing future research in a particular population in a way that reproduces inequalities over the long run,” Ashley says.

Ashley is careful to note that their understanding of the problem leans heavily on decades of work undertaken by scholars who work with indigenous communities, which have a long history of exploitation by academics, some of whom have shown no interest in community concerns while conducting their research. “There’s a joke in indigenous anthropology that every indigenous family has a mom, a dad, and an anthropologist,” Ashley says.

Marianna Couchie, former chief of the Nipissing First Nation in Ontario, Canada, has witnessed the burden of over-research within her own community. When the Nipissing started a new fishing program on their reserve, the lead in their fisheries department told Couchie that he was beset by interview requests in which the researchers were asking the same questions over and over again. Both Couchie and the fisheries lead were frustrated that so much of his time was being consumed with repetitive requests that conferred no value to their community. “They’re more than happy to share their stories,” Couchie says of the members of the Nipissing First Nation. But constant questioning—with no consideration for how the responses might be used to benefit the community —imposes an undue burden on the members’ time and energy. And without a voice in the research, indigenous participants have historically been unable to steer it toward responding to their needs.

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.”

Clark believes that participatory action research can be too time-consuming for most academics with scant time and limited grant money. But even if every scholar can’t work collaboratively with the communities they study, he thinks they can still easily alleviate research fatigue simply by being honest. It is harmful, he contends, to present research subjects with the best-case scenario, in which the research helps build policies that are relevant to their daily lives. “I think you have to approach it with a heavy dose of realism,” Clark says. “If it works, then brilliant. But the likelihood is that it’s not going to.”

Another way that indigenous groups have gained more control over research done in their communities is by requiring approval from their own internal ethics review boards. The residents of Manitoulin Island, in Lake Huron, have done just that: Any researcher hoping to conduct a study with the First Nations peoples living there must seek approval from the Manitoulin Anishinaabek Research Review Committee.

Couchie, the former Nipissing chief, sought out a similar solution when she saw how repetitive research was affecting the members of her First Nation. Together with scholars at Nipissing University, she established a research protocol governing studies with indigenous groups undertaken by the school’s researchers. “What good is being a number in a study?” Couchie says. “They need to be able to show that they’re going to leave something that is a benefit to those particular communities.”

But for diffuse groups, like the trans community, internal ethics boards or collaborations with specific universities likely aren’t feasible. Instead, Ashley argues in their Bioethics paper, the institutional review boards that exist at all universities and other research institutions can actively work to prevent research fatigue. Almost all studies that use human subjects need IRB approval—so, Ashley believes, these boards could effectively motivate researchers to account for fatigue in their work.

IRBs are far from community ethics boards. They are organizations that, Ashley says, can be “too anal and not anal enough” and can seem faceless to the researchers requesting their go-ahead. Nevertheless, by denying approval to studies that are likely to cause research fatigue—studies that are redundant, impose an unnecessary burden on their subjects, or fail to consider the needs of a community—they could potentially change academic norms. “What is really needed is a shift in culture across science,” Ashley says. “IRBs play a role in facilitating that culture shift.”

But, Ashley adds, “It’s not going to be enough. At the end of the day, what we need is for scientists themselves to internalize these issues.”