Keolu Fox is on a mission to increase ethnic diversity in human genome sequencing.

Fox, an indigenous Hawaiian geneticist, was studying at the University of Washington when he discovered that less than four per cent of human genome sequencing is non-European, with less than one per cent being from indigenous people. 

Human genome sequencing could play a key part in determining how genetics play a role in chronic diseases that disproportionately impact indigenous people, such as diabetes, Fox said.

But to collect the relevant indigenous data, scientists like Fox have a few formidable obstacles to get past.

"The issue is that indigenous people don't trust western institutions because of a history of exploitation," said Fox.  

The case for mistrust

Take the case of Arizona's Havasupai community.

Researchers from Arizona State University, led by scientist Therese Markow, went to the Havasupai community to take blood samples to be used in a diabetes project, with the goal of determining how genetics play a role in Type 2 diabetes.

Havasupai Lawsuits

Arizona Havasupai Indian tribe member, elder, and spiritual leader, Rex Tilousi, right, speaks during a news conference April 21, 2010, after a settled lawsuit against Arizona State University for misused blood samples. (AP Photo/Ross D. Franklin)

"They promised the community that they were going to understand the genetic mechanism behind Type 2 diabetes, which was just tearing their community apart," said Fox.

It was later discovered that their biological samples were used to challenge the community's origin story and test the link between schizophrenia and inbreeding — terms not agreed to by the Havasupai.

The community sued Arizona State University on the grounds that they did not consent to how their blood samples were used, and that it was a violation of medical confidentiality. The community settled out of court for $700,000.

Racism in research models

Kim Tallbear, a professor of Native Studies at the University of Alberta, studies how science and technology impacts indigenous people. She believes cases like the Havasupai highlight how scientists often take a lot of leeway when deciding what to study.

"The broader act of racism was [Therese Markow's] feeling that as a scientist she had the right to work on whatever she wanted to work on despite the sensitivities of the tribe and their own desires," said Tallbear.

Kim TallBear

Kim TallBear is one of the featured speakers for a panel discussion on feminism. (Courtesy Kim TallBear)

In addition to not collaborating with communities, some scientists are often not aware of their own problematic assumptions of race and genetics.

"People who get sampled in Africa get portrayed as almost the proxy for the ancient, less evolved, and of course the more evolved, contemporary humans are always represented in the discourse … as white westerners," said Tallbear.

"It's harder to spot the latent racism in human genome diversity research because you have to pull apart more complex threads … but when you pull apart those threads you see strong survivals of those earlier forms of racial thought."

Science in hands of community

At the forefront of change is a need to demystify science and foster indigenous community scientists.

"A lot of the time there's this paternalism, like, 'Well, I'm not going to explain to them every detail, because they can't pick up what I'm putting down," said Fox.

"But that's not true, I'm indigenous and I'm at the number one medical school in the country."

'By allowing indigenous people to have access to the technology we can begin to really indigenize the tools.' - Keolu Fox, geneticist

Fox is working to put science into the hands of indigenous communities through mobile genome sequencing.  

"There are new genome sequencers that are one-ten-thousandth of the size of these larger ones, and you can begin to use them in an indigenous space, and with cloud computation and remote access to the internet, you can basically have a genome centre in your backpack," said Fox.

"By allowing indigenous people to have access to the technology we can begin to really indigenize the tools," said Fox.

Taking cue from Beverly Becenti-Pigman, the chair of the Navajo Health and Human Resources Review Board, Fox said "We need less Indian experts and more expert Indians."

But when negotiating terms of research, Fox said that scientists need to recognize that indigenous communities are like independent states.

"They're a sovereign nation and they don't need to share [anything] with you. I think people need to understand that — this is the same way you'd negotiate a treaty with France," said Fox.

Even though Fox and Tallbear paint a grim picture of modern approaches to genetic research, Tallbear said that the Canadian Institute of Health Research is leading the way with their extensive guideline for how to conduct research with indigenous people.

"Canada is viewed as certainly ahead of where the U.S. is, and that's a lot of the reason why I moved up here," said Tallbear, who is originally from South Dakota.

But she adds a note of caution: "While you have more knowledge and are cognizant of aboriginal issues, you also have more explicit racism across the country."