Africa is particularly full of genetic treasure. “Based on our evolutionary history, all non-Africans are a subset of Africans,” says Tishkoff. “Africa has the greatest amount of genetic diversity in the world so you're likely to find something novel there.” She has worked with West African pygmies to identify genes involved in (short) height, and she’s interested in the Fulani, a West African group who “have an innate resistance to malaria, which no one understands.”
Groups like these are still underrepresented in genetic research, partly because the same harsh environments that have sculpted their genomes can scupper genomicists. “When we were working in Cameroon, I had to get two landcruisers and bring liquid nitrogen, a generator, and our own portable lab. Four members of my team got malaria. One got extremely ill,” says Tishkoff. And in other parts of Africa, “we’ve had car crashes and near-electrocutions. People can't imagine how hard it is.”
Even when researchers successfully run this gauntlet, they still face the hardest obstacle of all: peer review. “It takes hundreds of thousands of dollars to get 1,300 samples, and for that amount of money, you could get tens of thousands of Europeans,” says Tishkoff. “So when we try to publish, you'll get people who are used to studying these giant urban populations scoffing at our sample size.”
“So, what, we should ignore all these people? Not include them?” she adds. “It's not fair to them because they’re not benefiting from the knowledge that's gained, and the potential diagnostics and therapeutics that could come out of this. We lose out, and they lose out.”
But these scientific goals must be balanced against the cultural beliefs of indigenous groups, and well-founded fears over exploitation, as Rose Eveleth discussed in the Atlantic earlier this year. “We geneticists need to change our mindset,” adds Nielsen. “Instead of studying a population, you're working with that population. One objective is always to improve health care in the communities.”
For example, one of his collaborators on the Inuit project has been working to improve public health in Greenland for years. Similarly, Nielsen and fellow geneticist Eske Willerslev have been talking to Aboriginal Australian communities about research goals that are relevant to them. “They have a very high rate of type 2 diabetes, and they want to know why they get that more than Australians of European descent,” says Nielsen.
Implicitly, working with a population involves ensuring that they hear about the results of research that they were a part of. “We go back,” says Tishkoff. “We translate results to layman's terms and local languages. And let me tell you, they really, really appreciate that.”
She remembers recently working with Sandawe hunter-gatherers, when one man asked if she was from the same group that visited them in 1954. “They knew the exact date these people had come, and they had been waiting for over 50 years to get the results from the study. One of them had this pamphlet with a double helix on it. And he pointed to it and said: This is what you're studying, right? He clearly got it. And when I showed them the results, he said: We’re important.”