"To overcome decades of mistrust, a workshop aims to train Indigenous researchers to be their own genome experts"

"He kicked off his effort with a lecture at a reservation in Northern California. It was the first time he had spoken with a Native American community, despite years of studying their genetics. Expecting to gather dozens of DNA samples, "I brought a bunch of cheek swabs with me," he recalls. But at the end of his talk on DNA variation and the importance of filling in sampling gaps, the room fell uncomfortably silent. "Then one person stood up and said, ‘Why should we trust you?’" Malhi remembers. "That's a formative memory. I had not learned about anthropologists going to communities, taking samples, and just leaving."

He got no samples that day... 

SING aims to train Indigenous scientists in genomics so that they can introduce that field's tools to their communities as well as bring a sorely needed Indigenous perspective to research. Since Malhi helped found it at UI in 2011, SING has trained more than 100 graduates and has expanded to New Zealand and Canada. The program has created a strong community of Indigenous scientists and non-Indigenous allies who are raising the profile of these ethical issues and developing ways to improve a historically fraught relationship.

SING grads and professors say the experience has profoundly affected their work. At SING, "you can exist as your authentic self, as both Indigenous and as a scientist, without having to code-switch all the time. It's like coming up for air," says Savannah Martin, a Ph.D. student in biological anthropology at Washington University in St. Louis, Missouri, and a member of the Confederated Tribes of Siletz Indians in Oregon." 

http://www.sciencemag.org/news/2018/09/overcome-decades-mistrust-workshop-aims-train-indigenous-researchers-be-their-own

FB: "researchers working for the Human Genome Diversity Project (HGDP), a major international effort, were collecting samples from around the world to build a public database of global genetic variation. The project publicly emphasized the importance of collecting DNA from genetically isolated Indigenous populations before they "went extinct."

That rationale "was offensive to Indigenous populations worldwide," Gachupin says. "Resources for infrastructure and for the wellbeing of the community were not forthcoming, and yet now here were these millions and millions of dollars being invested to ‘save’ their DNA." The message from the scientific establishment was, she says, "We don't care about the person. We just want your DNA." Some activists dubbed the HGDP "the Vampire Project," believing the only beneficiaries would be Western scientists and people who could afford costly medical treatments."