Photograph by Vincent Forstenlechner / Connected Archives
Words by Kate Nelson
The wide-ranging, long-lasting effects that colonialism left in its wake have plagued Indigenous peoples for centuries: disproportionate poverty rates, marked health disparities, outsize violence, and lower life expectancies. But we’re just beginning to fully understand how data has long been wielded—from unjust collection techniques to the weaponizing of information to the total exclusion of certain populations—as a way to perpetuate racial inequities.
Now, following a global racial reckoning and amid concerns about artificial intelligence and information commodification, self-proclaimed data warriors are championing Indigenous data sovereignty (also known as IDSov) across sectors like healthcare, philanthropy, and more.
The pandemic thrust the issue of owning, accessing, and applying one’s own data into the spotlight. While Native Americans experienced inordinate COVID-19 illnesses and deaths, reporting on tribal communities in the United States was “woefully inadequate,” according to the Urban Indian Health Institute. Led by Pawnee data auntie Abigail Echo-Hawk, the organization analyzed data from all 50 states and published its report card, giving the nation a D+ grade for its effectiveness in collecting and reporting information about Indigenous groups. That lack of reliable statistics hugely hindered authorities’ abilities to make informed policy decisions, resulting in what Echo-Hawk dubbed a “data genocide.”
Seeing this calamity, data scientist and University of California assistant professor Desi Small-Rodriguez (Northern Cheyenne/Chicana) founded the traveling Data Warriors Lab in 2020 to better assess and address tribal nations’ needs. “The pandemic underscored that nobody is going to save us except ourselves,” says Professor Small-Rodriguez. “More importantly, the pandemic reinforced that nobody knows how to help our people better than we do. Our ancestral knowledge, sovereign action, and commitment to collective care and protection is what prevented the pandemic from becoming even worse across Indian Country.”
She brings her mobile science lab, dubbed the Data Warrior Pony, to Native communities nationwide to help “build data power” through collection and analysis. The trailer is kitted out with state-of-the-art technology and even a community training classroom. “We go only where we are invited and do only what we are asked to do; we never take,” says Professor Small-Rodriguez, who also cofounded the U.S. Indigenous Data Sovereignty Network and is a founding member of the Global Indigenous Data Alliance (GIDA). “The Data Warriors Lab is paving the way for a new lab model that is not based in any one institution, but rather is mobile and responsive to the data needs of tribal communities. Ultimately, if Indigenous peoples are not in control of their data, the potential for harm is too great.”
The situation might seem more dire with recent developments, but the fight for data sovereignty is not new. “Data extraction didn’t start in modern times with modern technologies; it has been collected for centuries,” said Anishinaabe-kwe data sovereignty and governance advocate Robyn K. Rowe of the Matachewan First Nation. “There’s a long history in Canada and the United States of pulling information from Indigenous peoples without an appropriate, ethical process. From a colonial perspective, it started with counting the Indigenous peoples inhabiting the land they wanted and extrapolating as much information as possible about us without our awareness or consent.”
“The pandemic underscored that nobody is going to save us except ourselves.”
As Native communities across Turtle Island were displaced from their ancestral homelands and disconnected from their traditional lifeways, countless Indigenous children were sent to Indian boarding schools where they were subjected to brutal treatment, forced assimilation, and scientific experimentation. “The government saw these First Nations, Inuit, and Métis children as the perfect pool of people to do research on,” Rowe explained. “Some of the nutrition studies they did involved starving these children and testing out infant foods like pablum. Having this research done on us—as opposed to by us or with us—really fueled the Indigenous data sovereignty movement nationally, then globally.”
Sadly, there’s a long history of unethical medical research being conducted on vulnerable populations, but the impact on Indigenous communities is often overlooked, said Joseph Yracheta (P’urhépecha/Rarámurì), who serves as executive director and laboratory manager of the Native BioData Consortium based in South Dakota. With a mission to ensure that advances in health research benefit all Indigenous peoples, it is the first nonprofit research institute led by Native scientists and tribal members.
“Everybody knows about the Nazi human experiments, the Tuskegee syphilis study, and Henrietta Lacks, but our stories are never talked about,” he said. “It’s normal for people to think of Natives as assimilated, conquered, or totally extinct, so we don’t get that same consideration and respect as an oppressed people.” He points to appalling examples such as the 1950s-era iodine 131 Alaska Natives study as well as prominent incidents of genetic data misuse among the Havasupai and Nuu-chah-nulth peoples.
Such atrocities have prompted tribal nations to take matters into their own hands in recent decades. Rowe traces the modern data sovereignty movement back to 1996 when the Assembly of First Nations Chiefs mandated Canada’s First Nations Regional Health Survey to empower Indigenous communities to conduct their own research in a manner that respects and reflects their lifeways. That in turn prompted the establishment of the First Nations Information Governance Centre and its OCAP principles: ownership, control, access, and possession.
“Those principles are really the first model for data governance created by and led by Indigenous peoples with the intention of advancing Indigenous rights,” explained Rowe, who is a GIDA executive member.
Since then, a handful of notable IDSov networks have popped up across the globe, most of which belong to GIDA. The international alliance was formed in 2019 with the convening of groups such as Maiam nayri Wingara Collective, Te Mana Raraunga Maori Data Sovereignty Network, and the aforementioned U.S. Indigenous Data Sovereignty Network, which will host its first national conference this April. Building upon the United Nations’ Declaration on the Rights of Indigenous Peoples, GIDA developed its CARE Principles (collective benefit, authority to control, responsibility, and ethics) to guide data producers, stewards, and publishers in upholding Native sovereignty and self-determination.
Rowe cautions that these guidelines are not meant to be one-size-fits-all solutions for all Indigenous communities. “Your framework needs to be grounded in the world views of the people you are servicing, incorporating our traditions, languages, values, and priorities,” she said, noting that the social determinants of health must also be considered.
“Our stories are never talked about. It’s normal for people to think of Natives as assimilated, conquered, or totally extinct, so we don’t get that same consideration and respect as an oppressed people.”
“Indigenous peoples have this added layer of colonial history that has led to these deeply rooted systemic burdens,” she said. “So in measuring mental wellness, for example, we also need to look at access to resources like healthcare, education, economic stability, clean drinking water, and healthy food options. If we turn the lens to measure system failures instead of Indigenous peoples—who are the recipients of care but also the victims of colonial policies—we might actually see where the true needs are.”
Of course, tribal communities need support from the research powers that be to bolster this effort. In a landmark decision in support of Indigenous peoples, the National Institutes of Health recently awarded a $9 million grant to the Native BioData Consortium and Stanford University to create an Indigenous-led Rapid Acceleration of Diagnostics (RADx) Tribal Data Repository. Initiatives like this are key in developing a more accurate data picture of Native groups, whose health disparities make them more susceptible to the impacts of climate change.
Yracheta is cautiously optimistic about what that spells for the future of IDSov. “The status quo of doing research with Native people is that you might have one or two token Native researchers on a project, but the people who are in control are usually non-Native, and they typically agree to all the data sharing policies,” he said. “So giving this grant to us—knowing who we are and what we stand for—signals that the NIH under the Biden Administration is trying to do better.”
For the project, Yracheta and his team will collaborate with scholars from premier research universities and health sites and use low-risk COVID-19 public health data about American Indians and Alaska Natives to design ethical approaches to data sharing, analysis, implementation, policy, and legal frameworks.
“We need to share our data in order to have interventions and implementations that will save people’s lives, but we also need to prevent others from exploiting and commercializing that data,” he said. “On one side of the equation, research has all this promise of a better future. On the other side, we have capitalism, which says you cannot access the top doctor, the best hospital, or the newest pharmaceuticals unless you have enough money. When data moves from the altruistic side to the other side, you become stuck.”
Although healthcare might be where the most egregious manipulation and misuse has taken place historically, it’s not the only sector where IDSov is on the rise. Carly Bad Heart Bull (Bdewakantunwan Dakota/Muskogee Creek), the executive director of the Native Ways Federation, has been on a mission to improve data accuracy in philanthropy since discovering discrepancies in Indian Country investing while working at the Bush Foundation.
In 2017, she and her colleagues there did a deep dive into decades’ worth of data to assess the organization’s coding and evaluating practices. They discovered that inconsistent methods resulted in unreliable reporting about how much Native communities truly benefited from philanthropy dollars earmarked for that strategic focus area.
“We found that many grants labeled as serving Indian Country were just serving an area where Native people happen to live,” Bad Heart Bull said. “It wasn’t due to intentional efforts to underserve Native communities; rather, it was due to inequitable coding practices. That led us to reconfigure our coding methods and to institute trainings to help staff understand if a grant was intentionally serving a Native community or just listing them as a demographic population.”
“If we turn the lens to measure system failures instead of Indigenous peoples—who are the recipients of care but also the victims of colonial policies—we might actually see where the true needs are.”
Now in her work at the Native Ways Federation, Bad Heart Bull provides training to foundations and other charitable organizations on a national level, helping to hold them accountable and furthering the IDSov conversation. But even today, she says it’s unclear how much funding is actually supporting tribal communities.
“Less than half a percentage of philanthropy dollars go to Indian Country,” she explained. “That number is bad enough, but when you dig deeper, it’s even more troublesome that those dollars are going to Native-serving organizations or projects, not necessarily Native-led initiatives. The bottom line is that there’s still a lack of adequate, equitable resources going out directly to Native communities.”
The impact that tribal groups have in helping mitigate the effects of climate change is not to be understated. For instance, although Native peoples comprise just 5% of the world’s population, they protect around 85% of global biodiversity. Further research from the World Resources Institute shows that securing Indigenous forest land tenure in the Amazon area could yield economic benefits up to $1.5 trillion during a 20-year period through reduced pollution, erosion control, and carbon storage.
The multifaceted solution starts with having Indigenous peoples at the table to control the narrative and outline success on their own terms, Bad Heart Bull explained. But there are longstanding power dynamics and mistrust issues at play that need to be navigated.
“As Native people, we’ve been so overanalyzed, surveyed, and researched—often to our detriment rather than our benefit,” said Bad Heart Bull, who underscores that data is not neutral despite its objective appearance. “We’re being asked to provide data that serves external systems and agendas, and most data collection and evaluation models were developed from a Western perspective. There needs to be a shifting of power that not only gives power back to us, but supports us telling our stories through the data.”
For Bad Heart Bull and her fellow Indigenous data warriors across various realms, it’s crucial that we take collective action for collective benefit now. “The work Native communities are doing is so imperative to the future of humanity and the future of this planet,” she said. “So much of our work is about remembering who we are as human beings, trying to be a good relative, and taking care of the land. We have the solutions to address so many issues going on in our communities and on this planet, and they need to be supported.”
They also caution that while marginalized groups experience magnified effects, everyone should be concerned about data privacy. “We are all giving our data away to have it reshaped then sold back to us,” said Yracheta. “Why all of a sudden are we a product for some unknown entity? Who are we the product to and why are we buying ourselves back? And why isn’t there a bigger conversation about this?”
Rowe echoes that concern. “Artificial intelligence’s intention is to map every molecule of this world, including things like genomic information,” she said. “The implications of AI really need to be explored in depth, but we’re not even at a point of having meaningful conversations about what’s happening on a basic level.”
And yet, even in these dark times, Rowe thinks there’s hope on the horizon.
“The Indigenous data sovereignty movement has grown exponentially, so there’s a real possibility for us as Indigenous peoples to be leading this overall movement,” she explained. “If we can raise that alarm, we can bring in organizations, institutions, and people—both Native and non-Native—to help. We need environmentalists, economists, policy makers, lawyers, social justice advocates, and activists to come together and figure out how we can do this in a better way that’s sustainable for all of us and the planet. But in order to accomplish that, we need everyone to acknowledge that Indigenous peoples are still here—and therefore our rights still exist, too.”
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Inside the Fight for Indigenous Data Sovereignty
