Genetic Databases Are Too White. Here’s What It’ll Take to Fix It

The first step to fixing the lack of diversity, the researchers argue in their paper, is to better engage underrepresented communities. Western researchers have a long history of exploiting people in low- and middle-income countries for their own scientific gain: They drop in, grab the data, and run back to analyze it in labs in Europe or the United States—a practice known as “parachute science.” Fatumo also points to the problem of “ethics dumping”—when researchers from countries with tough regulatory policies travel to places where regulation is less developed, and carry out ethically-questionable research there. 

Some of these communities have already begun to fight back against it. The San people of southern Africa, the world’s oldest population of humans, were long poked and prodded by scientists, who mined them for research with little benefit for the people themselves. In 2017, the South African San Council mapped out a code of ethics that stated that if scientists wanted to undertake research with the San people, they would have to observe the San values of respect, honesty, justice, and care. The problem, dubbed “research fatigue,” is not only experienced by Indigenous communities, but also among small groups like rural residents, refugees, people with rare diseases, and members of the trans community, who are often asked to participate in studies that that can be exhausting, repetitive, insensitive, or that don’t produce any clear benefits. A 2020 Bioethics paper argued for addressing research fatigue as part of a study’s approval process. 

Another part of the problem is that genetic research is dominated by scientists in high-income countries, and those leading the research are overwhelmingly white: In the US for instance, minorities made up just under 13 percent of tenure-track or tenured faculty in 2018. A 2019 report from the UK found that ethnic minority researchers receive less funding than their white counterparts. It can be difficult to get international studies funded, or it’s simply easier to do them at home; one of the common excuses Fatumo hears is that a study should be done in a developed country—because doing it in Africa would be more expensive. “I don’t think this is appropriate,” he says.

As a second step, Fatumo’s paper calls for powerful funding bodies—those like the Gates Foundation, US National Institutes of Health, or the Wellcome Trust—to  prioritize researchers doing work in underrepresented populations, especially if the researchers are members of those populations themselves. “It would be unfair to many of them to compete with scientists from the UK and other populations,” says Fatumo. Plus, locals are likely better placed to do the research in the first place, having intimate knowledge of these communities, as well as their trust. 

Perhaps the most successful example of this kind of initiative is the Human Heredity and Health in Africa consortium, or H3Africa, established by the NIH and the Wellcome Trust in 2012, which pushes for African scientists to perform genetic research within the continent. Fatumo credits H3Africa for his academic success, which enabled him to continue his training in the UK. Today, he is a computational geneticist with the Medical Research Council/Uganda Virus Research Institute and the London School of Hygiene and Tropical Medicine. He was involved with the biggest genomic study of continental Africans that has ever been published. (However, Fatumo is quick to point out that this amounted to just 14,000 participants from a continent of 1.2 billion people—the UK Biobank has 500,000 participants in a country of 67 million.)