The rise of inequality research: can spanning disciplines help tackle injustice?
22nd June 2022
Bringing society into research
One goal of inequality research is to make the production of science itself more egalitarian. As interdisciplinary approaches swell to meet growing demand from funding agencies and journals, scientists are grappling with how to meaningfully involve members of the public.
During the ten years that Sasha Henriques was a genetic counsellor in the United Kingdom and South Africa, she had nagging concerns about her work. She wondered whether the data being used to counsel patients about genetic conditions were adequately representative. And the lack of diversity among counsellors bothered her. To explore the intersection between race, ethnicity, ancestry and genomics, Henriques has started a PhD at the University of Cambridge, UK. “It’s all intersectional,” she says, “nobody belongs to just one group.”
I have funds to buy reagents, but not remedies
Henriques’s research will identify when it is relevant to include race in research data, how best to categorize human populations beyond race and ethnicity and how to make the benefits of genomics and health research equitable. But the issues are so complex that Henriques made sure her work was guided by her core value: offering people the tools and information they need to help them understand their genetic risk for disease and make any necessary health and lifestyle decisions — options that have been less available to historically excluded populations.
She advises other inequality researchers, especially those wanting to break into the field, to do the same. “It can feel quite overwhelming to narrow down the research to do something meaningful without going down all sorts of rabbit holes,” says Henriques.
Another key strategy is making sure that oppressed communities are directly involved in the core research design. For example, some health-equity researchers caution that publishing work on historically excluded groups that were not involved in the process might lead to specious conclusions that only perpetuate bias1.
If the goal is to find realistic solutions to inequality, Henriques notes, it is important to bring society into the scientific process. “It can be intentionally embedded within research and research design,” she adds. As Henriques works out how to do that in her research, she has created a website to begin conversations with members of the public (see www.geneticsengage.org).
Bringing people into research prevents the production of science from becoming yet another site of inequality. It also helps to unearth researchers’ hidden biases and ensures greater confidence in the research outcomes. “It matters who produces the knowledge,” says Susanne Koch, a sociologist at the Technical University of Munich in Germany who studies how inequalities shape forest and environmental research.