Growing up on the Cheyenne River Sioux Reservation in South Dakota, tribal member Burt Dillabaugh didn’t see a lot of people involved and working in the sciences.
“Unfortunately, in rural communities, there’s only so many different types of jobs,” he told the Daily Yonder. He added that there are largely a few types of jobs available on the reservation: teacher, medical professional, or business owner. “There weren’t always jobs in your field to come back to in which to work.”
Native BioData Consortium is trying to change that, while also educating the public about data sovereignty.
Data sovereignty means owning your own data, whether it’s your data from social media to your personal medical records and DNA, said Dillabaugh, tribal liaison for Native BioData Consortium. “Since data has value, data sovereignty means ownership of data, and specifically ownership of your own data. You have sovereign ownership of your data,” he added.
The Native BioData Consortium, also known as NativeBio, brings together Indigenous scholars, scientists, and experts in bioethics, data science, policy, law, and education to improve and protect the health, welfare, and culture of Indigenous peoples. It’s home to the first Indigenous genomic biorepository in North America that is located on sovereign Native American land and conducts health research for Indigenous peoples by Indigenous scientists.
“Our main mission is to be a safe harbor for all indigenous people, and even marginalized people around the world whose data has been collected since the ‘70s and is being collected now, and not giving them enough consideration or control of how their data is used or commercialized,” said Joseph Yracheta, executive director of NativeBio.
Yracheta said they are working on several data security issues. They are also working on two projects related to Covid-19, including Covid in wastewater and Covid nasal swabs.
“We have some upcoming projects with larger data management for tribes across the country,” he told the Daily Yonder. The Consortium has more than 10 employees and is growing rapidly, Yracheta said.
He believes Indigenous people are at a crossroads.
“I feel like we’re in the same space that we were right before the Great Depression,” he said. We’re having a lot of the same problems…. Right before the Great Depression and World War I, there was this huge push to take over other territories. And so we’re in the exact same place, almost the exact same actors, the exact same situation.”
The disruptive technologies right now are computing power and artificial intelligence, and other technologies that can be extracted from nature, he said. If you look across North and South America, there are only about 57 million Natives, according to official statistics, Yracheta said.
“The same technology that has finally given Native Americans a voice is the same technology that’s going to take it away and silence that probably forever,” he said referring to social media. “There’s such a lust for Native American data of any kind, whether it’s the rare earth minerals like lithium, whether it’s water, or oil, or gold. Whether it’s biological information from plants, animals, humans. It could pretty much close the door on us forever. And that, to me, is wrong.”
Karen Ducheneaux is the director of Tribal Ventures, a community partner, on the Cheyenne River Sioux Reservation. She said there are a lot of educational opportunities. She also said there’s education for people looking to come to the reservation and do research. Often, they have to approach tribal members in a different way than they may other individuals, she said.
“There’s a protocol and, and if you come to our people in a good way, then you’re going to be able to get good information out of them and be able to earn their trust,” she said. “If you’re trustworthy. But if you come in and you’re dealing with us like you might deal with another population that’s not us, then you might not have such a good experience.”
She said NativeBio is protecting Indigenous people, and helping to educate them on the issues at play.
“Some research is important and as long as it’s done in a respectful way and our tribe and our people are able to maintain their own sovereignty over their own data, then that’s a good thing sometimes,” she told the Daily Yonder. “But if somebody comes in here, and they’re just trying to take from us to get some more grant money, or to round out their academic experience, that’s not necessarily going to benefit us.”
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