Krystal Tsosie says there's a word for the gathering of genetic samples and data from underrepresented populations, including Indigenous people.
"It's just colonialism," Tsosie said. "If we really want to talk about justice and genomic justice, then we really have to talk about data equity. And also empowering data decisions from Indigenous communities like ours."
Tsosie is a geneticist and bioethicist at Vanderbilt University in Nashville. She's also a co-founder of the Native BioData Consortium, a sample and data repository — or biobank — located on the sovereign lands of the Cheyenne River Sioux Tribe in Eagle Butte, S.D.
The Native BioData Consortium is one of several new initiatives led by Indigenous scientists to ensure that the production of biomedical knowledge serves Indigenous communities.
First Nations biobank
In Canada, Dr. Nadine Caron, co-director of the Centre for Excellence in Indigenous Health at the University of British Columbia in Vancouver, is developing a First Nations biobank that will operate under the umbrella of the proposed Northern Biobank Initiative and serve First Nations in northern B.C.
Along with Laura Arbour and Wyeth Wasserman, Caron is also developing the Silent Genomes Project, which aims to reduce disparities in genetic research for Indigenous children.
Caron says the time for research done by Indigenous scientists that prioritizes Indigenous communities' needs is long overdue.
"There's been too much of what we call 'helicopter research' or 'vampire research,' where researchers come into a community with a question that isn't even a priority for the communities. [They] come in, take what they need and leave and don't even share the results with the community — let alone the potential benefits," Caron told .
– Dr. Nadine Caron
If we can somehow help the future generation be part of solutions that we don't even have the questions for yet, that would be phenomenal.
The history of such research goes back decades.
"As long as there has been science, the 'Indigenous other' has been an object — a research object," said Joanna Radin, an associate professor of history at Yale University in New Haven, Conn.
Radin says that after the Second World War, scientists began travelling the world collecting blood samples from Indigenous people. They then froze the samples in biobanks for future use.
"The idea wasn't: We're going to take this and do one test and discard it…. What we're talking about with these biobanks was a recognition that material could be used again and again and again," Radin said.
"And I think what's critical to appreciate is that once the sample was collected, no one went back to consult with communities to say, 'Is it OK if we answer these different questions using this blood?'"
Caron points out that biobanks are a critical part of biomedical research infrastructure. The difference, however, is that the benefits of such research have never been equal.
"First Nations have not had a biobank in this way developed for the purpose of research that will come in the future," she said.
"And so what will be in that biobank, how it will be collected, decisions that will be made are all questions that still remain to be answered by the governance structure that's been established for this First Nation biobank."
For Joseph Yracheta, a biomedical health disparities researcher and co-founder of the Native BioData Consortium, one of the biggest concerns is ownership of not only biological samples but the data derived from them.
Both Yracheta and Tsosie note a troubling trend where biological and genetic data obtained through open-access platforms is becoming commodified. These practices reflect a broader turn toward what American author and Harvard University professor Shoshana Zuboff has called "surveillance capitalism."
In a video produced by the Native BioData Consortium, Yracheta notes that the digital genome market is expected to be worth $50.4 billion by 2025.
Such commodification is one of the many reasons why Yracheta, Tsosie and Caron are pioneering initiatives that include principles of Indigenous data sovereignty.
Yracheta, who's based out of the consortium in South Dakota, says it's about changing laws and research practices so that commitments to diversity, inclusion and equity are fully realized, particularly when it comes to data ownership.
"If we give our data, and nothing on the other side is changed, there's no way that the benefits are going to come back to us and more likely it's going to be exploitative," he said.
"So just like we were exploited for land and crops, medicines and gold and oil, we will be exploited for the biological treasures that are in our genome."
As to what this research can do in the future, Caron says she hopes fairer research methods will give Indigenous communities a choice on whether or not to participate and help pave the way for a new generation of Indigenous scientists.
"If we can somehow help the future generation be part of solutions that we don't even have the questions for yet, that would be phenomenal," she said.
Guests in this episode:
Dr. Nadine Caron is co-director of the Centre for Excellence in Indigenous Health and the First Nations Health Authority Chair in Cancer and Wellness at the University of British Columbia. She's also a leader of the Silent Genomes Project and a member of the Sagamok Anishnawbek First Nation.
Joseph Yracheta is a biomedical health disparities researcher and co-founder and vice-president of the Native BioData Consortium. He is of MexIndigenous American heritage and identifies with the P'urhépecha and Rarámurì peoples.
Joanna Radin is an associate professor of history of medicine at Yale University. She's the author of
This episode is part of our series called — exploring what our bodies express and repress, both literally and symbolically. Find more episodes here.
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