Including Indigenous Voices in Genomics

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Some scientists want to use the DNA of indigenous people to reconstruct the “human migration story”: the history of how people spread from Africa to everywhere.

But many in the indigenous community who’ve contributed their DNA for science feel these types of studies are exploitative—and say they don’t like being left out of the conversation.

“There’s a long history (of) anthropologists and scientists going to indigenous communities, getting what they need leaving and never coming back.”

University of Illinois anthropologist Ripan Malhi. 

“I learned early on that that was the norm in science and anthropology up until recently.”

To help change that system, in 2011 Malhi launched a program that provides hands-on genomics training to Native American and other Indigenous scientists–and laypeople. It’s called SING– Summer Internship for Indigenous People in Genomics

“We discuss all week about genomics and how it can be used as a tool and how it may fit or not fit with Indigenous ideas and knowledge. We have discussions on how to decolonize science, and then we do a large number of discussions about ethical, legal and social implications.”

This year’s SING workshop wrapped up earlier this month. Krystal Tsosie is a Navajo geneticist and one of the organizers.

“SING has been influential in training the next generation of indigenous scientists, so that we can ensure that science is done by us, for us, and truly benefits us.” 

Tsosie says she’s the only Indigenous PhD student in science at Vanderbilt… and the SING workshop has helped her feel less isolated. 

“Getting that sort of sense of community from my indigenous peers who are undergoing the same sort of challenges in academia is great.”

SING has trained more than 120 participants to date. In 2018, alumni and faculty published ethical guidelines for scientists on how to approach genomics research in a way that is sensitive to the interests of Indigenous people and that can benefit their communities.

Malhi says he now approaches his work with Indigenous communities as a collaboration.

“I work with the communities to figure out what they want to study, as well as what we want to study, and basically partner with them.”

In her research, Tsosie studies pregnancy complications among Ojibwe women in North Dakota, and how environmental factors contribute to disease among Indigenous communities in South Dakota.

She says partnering with Indigenous people is critical…

“…to ensure that genomics research that involves Indigenous people will actually benefit us, as opposed to just using us as subjects as we have in the past.”

—Christine Herman

[The above text is a transcript of this podcast.]

[A version of this story originally ran on Illinois Public Media, the NPR member station serving east-central Illinois.]


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Originally posted by: Christine Herman

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