A long history of distrust has kept genomic research out of indigenous communities, but UW Ph.D. candidates Kate West and Keolu Fox are working to change that.
“There’s a long history in tribal communities of ‘helicopter research,’ researchers coming in, taking data, leaving, and never really being concerned about whether or not their research is helpful to the community,” said Wylie Burke, principal investigator at the UW Center for Genomics and Healthcare Equality.
Fox and West recently spoke on a panel called “Engaging Indigenous Peoples in Genetics” at the meeting for American Society for Human Genetics in Baltimore, where they discussed how genomic research can be performed better through Community Based Participatory Research, which sees these communities as partners and works toward goals that will benefit them.
“It’s doing research with communities, not just in communities,” West said. “There’s a history of harm, so we are at a place where researchers need to rebuild trust because the research enterprise as a whole has really failed a lot of communities.”
West, currently pursuing her Ph.D. in public health genetics, works at the Center for Genomics and Healthcare Equality, and has been involved in research with Native Alaskan communities for nearly 10 years. She said the root of distrust among indigenous people toward genetic research stems from many instances of outside researchers doing genomic studies within indigenous communities, but misusing data and not conducting studies that actually aim to help the communities.
One textbook example of this misconduct is the Havasupai case, where researchers told the tribe they were gathering their tribe’s genetic information to investigate their high rates of type II diabetes. Without the tribe’s consent, the researchers also used those samples to investigate topics that were offensive to the tribe, such as inbreeding and schizophrenia.
“I think they set back any potential for a positive relationship between indigenous people and Westerners decades,” Fox said. “There are health care disparities that need to be addressed, but we need to work with indigenous people and make them partners, not guinea pigs.”
Fox, a Native Hawaiian working toward his Ph.D. in genome sciences, stressed the importance of including native voices in research.
He expressed the need for systemic change, comparing students of majority populations to those from minority backgrounds. He said often times when finding students to participate in research, principal investigators (PIs) will choose the students who have strong backgrounds and lots of research experience already.
These PIs don’t have to put as much time into shaping students who have had access to previous research opportunities as they might with students with a less traditional scientific education.
“Our institutions are only rewarding one problem solving style and that does a disservice to science as a whole,” Fox said. “Indigenous kids think about science totally differently, the questions we ask are different, and the potential for cornering a new niche within science is way higher. By empowering … minority students, I think the potential benefit down the road is a lot higher.”
West and Fox hope to continue working with these communities as partners, working toward improving the well-being of the people, and shaping research around topics those communities see as beneficial.
“We’re not just doing a checklist and saying we did this, we did that, so we’re the good guys,” Burke said. “What we’re saying is that we are interested in doing research in which there is a partnership amongst all the stakeholders; that there’s a respect, and that we learn from each other.”
As he finishes his doctoral program, Fox hopes to continue to connect his identities as an indigenous person and as a scientist, and to use his two spheres of knowledge to move science and medicine forward.
“It’s really important that both spheres, indigenous and western knowledge be recombined,” Fox said. “It’s a perfect way to explain how the worlds should come together to make something greater … we need to recombine western and indigenous knowledge to help form the trajectory of science.”
Reach reporter Megan Herndon at firstname.lastname@example.orgTwitter: @megherndon