A 2019 Pew survey revealed that nearly 80% of U.S. adults are concerned about how companies use their digital data. The pervasive user agreements that underpin data mining, and which indemnify tech companies and e-commerce websites against legal repercussions from their collection and sale of private data, do not change the basic fact that the ethics of the practice are in constant debate. Most people have little idea how their data is used, and few ways to find out. Now imagine that what's been mined was not your data, but your blood, and it was done without any consent at all.
In 2003 at Arizona State University, anthropologists and genetic researchers appropriated DNA samples originally collected from Havasupai tribe members to study diabetes, but used the samples to look for other diseases and genetic markers, including schizophrenia, ethnic migration, and inbreeding. The appropriation of this material not only revealed a troubling lack of researcher empathy and flouted research norms, but also violated deeply held Havasupai cultural and social belief systems.
The example underlines the fact that research practices aimed at Indigenous peoples historically have been opaque and extractive, if not predatory. In response, Indigenous communities have increasingly resisted longstanding researcher entitlement in favor of new ideas that value Indigenous peoples, viewpoints, and knowledge systems. What has emerged is the concept of Indigenous Data Sovereignty (IDSOV), which is the right of Indigenous peoples and nations to govern the collection, ownership, and application of their own data.
The third installment of GrantStation's partnership with ARNOVA (Association for Research on Nonprofit Organizations and Voluntary Action), sees us explore the emerging concept of Indigenous Data Sovereignty with Raymond Foxworth and Cheryl Ellenwood, who have collaborated on a paper titled, “Indigenous Peoples and Third Sector Research: Indigenous Data Sovereignty as a Framework to Combat Oppressive Research Practices.” The paper is centered around an analysis of articles from Voluntas, the official journal of the International Society for Third-Sector Research, an interdisciplinary hub for peer reviewed writings. Foxworth and Ellenwood found a dearth of substantive content related to Indigenous peoples or communities within third sector research. They elaborate on this in the interview below, but suffice it to say that it is precisely this invisibility they seek to highlight, and perhaps help to reverse.
Ellenwood, a citizen of the Nez Perce Nation, is a PhD candidate in Public Administration at the University of Arizona, and is an organizational scholar. She is also a Scholarly Assistant Professor at Washington State University. Her research interests include a critical examination of public organizations and the public they define and serve, specifically how segments of society are both included and excluded due to organizational actions that are founded upon white supremacy. She also examines the way minority-led and Indigenous-led nonprofits are explicit about the public they serve and how these organizations achieve social equity and inclusion.
Foxworth, a citizen of the Navajo Nation, holds a PhD in political science from the University of Colorado at Boulder. He serves as Vice President of Grantmaking, Development, and Communications for the nonprofit First Nations Development Institute. First Nations, which recently celebrated its 40th birthday and holds a four-star rating from Charity Navigator, directly supports Native American communities with the goal of revitalizing economies on reservations and in rural areas where Native Americans reside.
Q: The premise of your research is basically that the third sector has failed Indigenous communities by being extractive, predatory, and selfish. You describe researchers figuratively parachuting into Indigenous communities, collecting data, and never being heard from again. Is this a controversial area of research?
Raymond: I don’t know if these ideas are controversial, but they certainly reflect a reality for many Indigenous communities around the globe. What our paper is saying is that exclusionary and harmful research practices cannot continue, and we are seeing Indigenous communities globally saying, “We are not going to take this anymore.”
Q: You write that the origins of civil society research are rooted in the erasure of Indigenous peoples. Can you elaborate on that a bit?
Raymond: Most researchers behind civil society literature, including scholars who talk about the benefits of civil society on democratic development and community development, largely base their analysis on the writings of Tocqueville and his view of associational life in America. But as in other studies of American political, social, and economic development, Indigenous nations are largely absent from these narratives and analysis. Yet, it is well-known from countless historians and Indigenous peoples that Indigenous nations across the Americas have always resisted American expansion, the theft of Native lands, and the diminishment of Native sovereignty.
We also know that in many contexts American civil society thrived in response to Native nations in the U.S. For example, church groups were organized to “save” and “civilize” Native people, and land associations were created to take Indigenous land during westward expansion. Native people have been excluded from this narrative. The organizing of settler populations has become the focal point of analysis and has been assumed to be normatively positive. But from the perspective of Indigenous nations in the U.S., these processes were instead harmful and genocidal and sought to disrupt and eliminate Native existence.
This erasure continues today. For example, in our article we look at all articles published in Voluntas, one of the leading journals on third sector and civil society research, from 2010 to 2020. We find that of the numerous articles published, only 61 mention Indigenous peoples or communities, and most of these mentions were singular or sporadic. We see this erasure happening, despite the fact that we know Indigenous groups are involved in civil society and social movements in many contexts, and in many places around the globe.
Q: Last year, the CDC refused to share data about COVID-19 rates in Native American communities that tribal epidemiology centers requested. It seems like a textbook example of what Indigenous peoples are dealing with. We're talking about potentially life-saving data. What rationale did the CDC give for withholding this info, if any? Was it just a knee jerk reaction to a request from people outside the normal channels of power?
Cheryl: In short, refusals by the CDC and some states to share COVID-19 data with tribes (and tribal epidemiology centers, which are not tribally based, but rather regional centers) reflect longstanding lack of knowledge about and refusal to acknowledge tribal sovereignty. Tribes and tribal epidemiology centers are public health authorities in the same way as counties or states. The CDC and some states claimed privacy concerns, while others refused to acknowledge that tribal sovereignty exists. COVID-19 data access and sharing issues for tribes lay bare the necessity of government-to-government relationships, not only among tribes and the federal government, but also the importance of such relationships between tribes and local and state governments.
Q: When did the Indigenous Data Sovereignty movement begin?
Raymond: Indigenous peoples around the world have long talked about the harms and abuses caused by research and researchers in their communities. So I think it’s important to acknowledge that the Data Sovereignty Movement dates back to the time when western researchers first stepped foot into an Indigenous community to do “research.” In 1969, Vine Deloria, Jr. mocked, “Here come the anthros,” in his book Custer Died for your Sins. He highlighted the persistent and historical trend of researchers using their western training to (mis)interpret Indigenous communities, their customs, practices, beliefs, and organizing systems. All this is to say there has long been an awareness of harmful research taking place in Native communities.
But in the U.S., over the past 20 years or so, we have seen Native nations act to try to stop and better control research taking place in their communities. This includes the creation of tribal Institutional Review Boards in which researchers must obtain permission from communities to do research and are asked questions about data use, intentions, expected outcomes, and potential harm. Globally, the United Nations Declaration of Indigenous Peoples (UNDRIP) has also provided new opportunities for Indigenous communities worldwide to coalesce around different issues and challenges and highlight similar abuses by settler governments and researchers. UNDRIP has really provided a global framework for mobilizing Indigenous communities to assert greater control over all aspects of local development, including around research and data.
Q: This makes me wonder if the push for Indigenous Data Sovereignty has bumped up against the issue of data privacy in general. How does IDSOV square with big data and big tech uses of data?
Cheryl: The use of big data is going to become increasingly important. We don’t go into it but this is an area of concern everywhere for Aboriginal and Torres Straight Islander peoples in Australia, and Africa’s Indigenous peoples. [University of Tasmania sociology professor] Maggie Walter and others have written about how the Open Data movement also fails to recognize Indigenous worldviews or priorities in Australia. Concerns are also evident in Africa with the Internet of Things and Big Data. Basically, the power dynamics with free technology and its global usage and perceived benefits do not consider Indigenous peoples’ humanity and needs, and may continue this predatory cycle by seeking profits over any data sovereignty or data governance needs of Indigenous peoples.
Q: Generally, Indigenous peoples have had little power, wherever in the world you care to look. There are exceptions. Evo Morales in Bolivia comes to mind. In the U.S., Deb Haaland, from New Mexico's Laguna Pueblo, was just confirmed to Joe Biden's cabinet as Secretary of the Interior. You both contributed to a Washington Post article about her in January. Do you see Haaland's elevation to the cabinet as a watershed for Indigenous issues like data sovereignty?
Cheryl: Secretary Haaland's confirmation as the first Indigenous person to serve on the president's cabinet most definitely elevates Indigenous rights and interests in many ways, from representation to seeing someone like yourself serving in such an important role to including someone with her lived experience and educational training in federal leadership. The new administration and Secretary Haaland's role advance Indigenous data sovereignty by creating an environment that's willing to engage with the sovereign rights of tribes. This environment offers the opportunity for investments in Indigenous nation and community data capacity and capability, the creation of federal and other institutional policies that forefront Indigenous participation and leadership in decisions about data access, use, reuse, and stewardship, and makes changes to digital infrastructures to create space for tribal provenance, permission, and protocols for care, sharing, and reuse.
Q: You note in your paper that Indigenous peoples possess knowledge systems that address some of the globe's more pressing challenges, for example climate change. Researchers are beginning to understand this, but are there any indications that the political sphere has grown aware of the value of Indigenous knowledge?
Raymond: We have a long way to go in terms of truly acknowledging and respecting the contributions of Indigenous peoples. But there is some progress. I think in areas of economic development, community development, and climate, people historically have operated in silos, staying focused on narrow systems or processes and not acknowledging that living things, the natural world, is complex, interdependent, and interrelated. In other words, in the Western quest for parsimony, we have forgotten about the complexity of the natural world. This is something that Indigenous communities have always known and practiced—be it around fire mitigation strategies for their forests, economic development, or community development. It is my hope, as western societies grow in acknowledging this complexity in all aspects of our lives, that Indigenous peoples’ voices, perspectives, and leadership will be truly valued by western societies.
Action steps you can take today
- Read what Raymond, Cheryl, and others wrote about the nomination of Interior Secretary Deb Haaland.
- Read more about Indigenous Data Sovereignty.
- Read more articles featuring our partners from ARNOVA.
ABOUT RAYMOND FOXWORTH
Raymond Foxworth (Navajo Nation) currently serves as Vice President for First Nations Development Institute. First Nations is a 40 year-old Native American-led nonprofit organization that directly supports the knowledge, innovation and organizing of Native American communities as work to control their assets and diverse pathways to community and economic development. Raymond holds a PhD in political science from the University of Colorado at Boulder.
ABOUT CHERYL ELLENWOOD
Cheryl Ellenwood (Nez Perce) is a PhD Candidate in Public Administration at the University of Arizona and an organizational scholar. She is also a Scholarly Assistant Professor at Washington State University. Cheryl's research interests include a critical examination of public organizations and the 'public' they define and serve, specifically how segments of society are both included and excluded due to organizational actions that are founded upon white supremacy.