Abstract
When public health considers the health and disease status of Indigenous people, it often does so using a racial lens. In recent decades, public health researchers have begun to acknowledge that commonly employed racial categories represent history, power dynamics, embodiment, and legacies of discrimination and racism, rather than innate biology. Even so, public health has not yet fully embraced an understanding of other components of identity formation for Indigenous people, including political status within Native nations.
In this article, we discuss why the continued racial conceptualization of Indigeneity in US public health is inadequate. We begin by providing a brief account of racialization as a tool of colonization, of failure to recognize and acknowledge Indigenous sovereignty, and of common public health practices of Indigenous data collection and interpretation.
We then articulate the stakes of racialized health data for Native communities. We end by offering alternative approaches, many drawn from scholarship from Indigenous researchers. (Am J Public Health. 2021;111(11):1969–1975. https://doi.org/10.2105/AJPH.2021.306465)
In what is currently the United States, it is common to encounter statements like “American Indian/Alaska Native adults are nearly three times more likely than non-Hispanic white adults to be diagnosed with diabetes,”1 and “the incidence of laboratory-confirmed COVID-19 cases among AI/AN persons was 3.5 times that among white persons.”2(p1169) In addition to communicating the disproportionate disease burden borne by American Indians, Alaska Natives, Native Hawaiians, and Pacific Islanders in the United States, these aggregated, racially bound statistics are difficult to accurately interpret and carry four significant implications, which we outline in the following paragraphs. We primarily focus this article on the experiences of American Indian people whose traditional homelands are located in what is currently understood as the lower 48 states of the United States. Although many of these experiences will also resonate with Native Hawaiians, Pacific Islanders, and Alaska Natives, there are also critically distinct contexts that shape issues of citizenship and governance differently for their communities.
In this article, we suggest that without careful contextualization and consideration of the historical background of racialization in the United States, common practices that categorize Indigenous people by race imply a biological or genetic origin, rather than a structural cause, for health differences between Native and non-Native communities. Second, by ignoring the unique and complex sociopolitical and historical contributors to health within each tribal community, such approaches mistakenly represent diverse Native communities as a monolith. Third, when researchers perceive Native peoples as a homogenized group, they often fail to assess the importance of tribal sovereignty and locally specific metrics of belonging within Native nations. Lastly, such approaches obscure how colonial policies have disproportionately and negatively affected health and well-being, placing the blame on individuals instead of the compounded impacts of a systematic lack of access to care, environmental racism, economic deprivation, educational violence, and discriminatory policies.
We begin with background information about identity, racialization, and common practices for collecting and using data about Native people from public health research. After detailing what is at stake for Native communities when collection and interpretation of Native-specific health data rely solely on a racial lens, we end by offering alternative approaches.
Throughout this article, we use “Native” and “Indigenous” interchangeably, a practice based on our experiences as Indigenous women and as researchers. The term “American Indian” is inscribed in federal law, and we use American Indian or the category “American Indian/Alaska Native” (or AI/AN) where such categorization aligns with large existing data sets or with federal law.
BACKGROUND
Before the onset of colonization, there were no “Indians” or “Natives”; rather, there were Anishinaabeg, Dee-ni’, Chahta, Diné, Samoans, and hundreds of other distinct societies. Our shared experiences of colonization link us together, even as our distinctiveness as individual nations persists. Our identities today continue to be intimately shaped by our relationships to each other, to our homelands and waters, to our plant and animal relatives, to our languages, and to our teachings. We do not, and have never, needed external governments or researchers to tell us who we are. Rather than biology, our identities reflect our shared obligations to one another and these ongoing connections.
For many Native people, our status as citizens or descendants of specific Native nations plays a key part in how we perceive our identities. This forms the basis for our political status, as citizens of both the United States and our respective Native nations. Native nations are sovereign governments with the inherent right to determine criteria for their citizenry, a right that the Supreme Court of the United States (in Santa Clara Pueblo v Martinez) and the United Nations (in its Declaration on the Rights of Indigenous People) have each recognized as among the core obligations and rights of any sovereign government. Each Native nation makes decisions about its citizenry based on its unique historical, sociopolitical, and environmental contexts.3
Today, Native people live in urban, suburban, and rural settings across all states and territories. As researchers, it is imperative that we listen to, honor, and abide by the ways in which people identify themselves, including attending to the vast diversity within and between Native communities. Doing so must take priority over convenience in how we think about, organize, analyze, and present our data. Doing otherwise is not only unethical, but can also result in poor, inaccurate results that collapse critical differences between communities.4
FEDERAL ATTEMPTS TO RACIALIZE AND HOMOGENIZE
The United States, a nation with a long history of differentially defining racial groups using biologically based notions of race to the direct benefit of White Americans, has insisted on a false homogenized and racialized narrative about Indigeneity.3 Blood, for example, has been used as a structuring category to both categorize and erase Native people. This has been most visible in the policy of blood quantum, a government-created metric under which agents of the government would identify and record Native people by their perceived percentage of “Indian blood,” often based on phenotypic characteristics. Use of blood quantum was the beginning of a system of administrative genocide whose purpose was to eliminate Indigenous peoples and, by extension, open Indigenous lands for settler use.
This homogenization has long been a tool for settler acquisition of Indigenous lands; during the treaty-making period, policymakers used blood as a metaphor for identity as they defined legal and social concepts of race.5 The United States used this racialization in its attempts to render Native peoples interchangeable for the purposes of control, as federal Indian Affairs Commissioner J. D. C. Atkins wrote in 1888: “The object of greatest solicitude should be . . . to blot out the boundary lines which divide [Native people] into distinct nations, and fuse them into one homogeneous mass.”6(p9) Rather than shared biological traits, it is this shared experience of colonial harm, as well as shared strategies for resistance to it, that connect Native people.
PUBLIC HEALTH METRICS AND INDIGENEITY
The social and historical context of each Native nation shapes the distribution of health and disease within its population today, because of centuries of colonial policies aimed at Indigenous elimination.7,8 Examples of these include, among others, removing Native people from their homelands, which disrupted medicinal, nutritional, and ethnobotanical practices; crowding Native students into federal boarding schools, deeply unhygienic spaces where Native youths faced both assimilation and abuse as well as disconnection from their families, communities, and traditional knowledge; sterilizing Native women in Indian Health Service facilities to reduce the size of subsequent generations; mining, nuclear testing, and nuclear waste disposal on the homelands of American Indians, Alaska Natives, Native Hawaiians, and Pacific Islanders, resulting in high rates of environmental exposures and disease; and superimposing government-delivered commodity food rations while restricting access to traditional Native foodways, contributing to epidemics of diabetes and metabolic disease in Indian Country.
Existing health disparities stem from these and other forms of structural harm rather than biological deficiency. And yet, the persistent rhetoric of race within public health research obscures the impact of colonial violence on health outcomes. To make matters more complicated, there is no consensus for how to collect, organize, and analyze data from Indigenous research participants. Large data sets often use either self-reported survey questions, which may allow respondents to include their tribal nation in addition to the more generic “American Indian/Alaska Native,” or close-ended questions that ask respondents to identify themselves within a given racial schema (e.g., White, Black, other). Both options are vulnerable to overcounting (when people who are not recognized by a Native community mark themselves as Native) and undercounting (when multiracial people are not given the option to select multiple racial identities). As an example, the 2020 US Census, which helps determine resource allocation based in part on race, used the following close-ended self-reported categories for race: White, Black or African American, American Indian or Alaska Native, Asian, Native Hawaiian and Pacific Islander, and some other race, with the additional option to write in tribal affiliation. Other studies or surveys measure race as determined by an outsider, often a researcher or medical professional, with or without the input of the survey participant. This can result in discrepancies between an individual’s self-identification and their official record, as stereotypes of what Native people are “supposed to look like” dominate the national imagination.
WHAT IS AT STAKE
As the categories “American Indian/Alaska Native” and “Native Hawaiian/Pacific Islander” have become codified in many areas of social inquiry in the United States, so too have they passed into usage in public health research, leading many researchers to erroneously see racial articulations of Native peoples as legitimate. To better express the problems associated with applying these racial categorizations, we name what is at stake for Native people and communities in the United States with this continued use.
Public health’s use of racial categorization ignores the treaty-based nation-to-nation relationship between the United States and Native nations. Doing so also ignores the legal implications of sovereignty and self-governance, particularly around defining citizenship.5 Any attention to Indigenous health outcomes must therefore reflect the ways in which Native nations define their citizenry, rather than masking each under a ubiquitous, homogenizing category.
The continued application of this categorization also ignores individuals’ articulations of themselves. Use of the racialized category is a values-based decision, one that sends the message that the racial designation of Indigenous people matters more than other ways of defining Indigeneity.9,10 Privileging race means that other articulations of belonging, based on ceremony, citizenship, or kinship, are not seen as legitimate or are seen as less legitimate than racial criteria.9 Continued use of the racial Indigenous categorization lends credibility to the colonizer’s view of who qualifies as “Indian” and clearly articulates who has the power to decide.10,11 Any attention to Indigenous health outcomes must therefore also reflect the ways in which Indigenous peoples define themselves.
Public health’s use of the racial categorization system also supports the dispossession of Native communities of their land and resources,10,11 as it furthers the logic embedded in colonial policies that have long been “rooted in imperialism, White supremacy, and a desire for material gain.”12(p92) Indigenous populations, when viewed as a racial category, are seen as small and shrinking in size because of inaccurate assumptions about the inevitability of Indigenous extinction, assumptions that emerge from both historical narratives steeped in Manifest Destiny and racist beliefs that multiracial Indigenous people are not “Indigenous enough.” Research practices that lump or altogether drop Indigenous peoples from data sets through practical considerations regarding sample size perpetuate discourses of Indigenous disappearance and death by reflecting a false perception of a country without Native peoples where Native lands and resources are up for grabs by others.
Additionally, non-White racial categories are often conflated with innate biological or genetic deficiency, and thus any connection to disease is highlighted.13 As such, racialized communities are seen as bearing a disproportionate burden of morbidity and mortality, whereas Whiteness is rarely connected with health risks.14 One result of incorrectly placing causation for the burdens of disease on racial groups instead of structural factors is that it blames Native people (rather than settler colonialism) for health disparities.
Finally, condensing all Native people into a single category erases the unique experiences of each tribal community—experiences that have a significant impact on health. Conclusions and health interventions based on research conducted using such broad strokes are unlikely to be effective at either identifying the root causes of health disparities unique to each tribal community or identifying effective intervention strategies. In light of the immense diversity within Indian Country, Native people should not be consolidated under a single category for health research. Such statistical categories obscure the distinctions between Native nations (each with its own histories, political and environmental contexts, and systems for governance, education, and health) and reify notions of Indigenous essentialism.
TOWARD SOLUTIONS
In this article, we have offered a brief window into identity and the ramifications of public health’s “colonial blindness” on the collection and analysis of health data for Indigenous peoples.15 Moving ahead, we urge a pivot in public health scholarship to an approach that identifies the true factors responsible for poor health outcomes in Native communities. These shifts may lead to more targeted, systems-focused interventions and promote increased tribal self-determination in health research processes. For those interested in pursuing public health research with Indigenous communities, we offer a set of recommendations, which join our own suggestions with those previously published by colleagues.16,17 Indeed, 20 years ago, Burhansstipanov and Satter raised several of these issues and offered solutions in this very journal.17 We lament that many of these suggestions have gone unheeded. Boxes 1 – 4 synthesize previously proposed solutions as well as our own suggestions. Note that the boxes do not provide an exhaustive list of all activities that researchers might do to be good stewards of the research process, nor do they reflect every recommendation from previous studies. However, we believe the included recommendations offer a good place to start in supporting Indigenous public health in a way that upholds tribal nations’ sovereignty with regard to their people, lands, and data. Such recommendations are in alignment with Articles 4 and 7 of the declaration of the Indigenous and Tribal Peoples Convention of the International Labor Organization, which hold that Indigenous peoples have the right to set priorities and parameters for projects that affect their lives, and that all initiatives must protect against harm to Indigenous bodies, lands, properties, cultures, and institutions.
BOX 1.
Potential Solutions for Commonly Encountered Issues in Indigenous Health Research: Data Aggregation
1. Data aggregation severely limits the local applicability of research results but is unavoidable if no effort is made to obtain tribal affiliation of participants.
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2. Data aggregation may raise ethical concerns if appropriate tribal approvals are not sought during the research process.
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3. Data aggregation across tribes obscures important health disparities within and between tribes.22
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BOX 2.
Potential Solutions for Commonly Encountered Issues in Indigenous Health Research: Avoiding the “Other” Category
Adequate data regarding disease burden is critical when justifying the need for prevention or intervention programs and health policies. Indigenous peoples may make up a small proportion of the overall participants in health studies, but altogether removing Indigenous peoples from results or collapsing Indigenous populations into an “other” category obscures important and needed health data.
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BOX 3.
Potential Solutions for Commonly Encountered Issues in Indigenous Health Research: Indigenous Identification and Classification
1. Providing an opportunity to mark “all that apply” rather than a single racial or ethnic identity allows individuals free choice in self-identification.
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2. Racial misclassification, specifically undercounting of Indigenous populations, is a well-described issue in health research. Administrative data frequently misreport Native people as belonging to other racial or ethnic groups.
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BOX 4.
Potential Solutions for Commonly Encountered Issues in Indigenous Health Research: Avoiding Exploitative and Extractive Research Practices
There is a long history of researchers enacting exploitative and extractive practices in Indigenous communities, and studies have too often presented Indigenous peoples as deficient.
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CONCLUSION
Public health researchers and practitioners must listen to and honor the ways in which Indigenous peoples identify themselves. Doing so must take priority over convenience in how we think about, organize, analyze, and present our data. Given the history of unethical and inappropriate health research in Indian Country and the long-standing practice of non-Native researchers imposing their own definitions for and expectations about Native communities, it is essential to listen to and follow the research priorities and guidelines of Native nations and Native-run organizations. Native-run organizations have issued guidance for these processes, including the National Congress of American Indians’ Walk Softly report,27 several briefs by the Urban Indian Health Institute,30 and the United States Indigenous Data Sovereignty Network.31 Relatedly, a recent National Institutes of Health–commissioned document, American Indian and Alaska Native Research in the Health Sciences: Critical Considerations for the Review of Research Applications, assists reviewers in understanding the unique context of funding applications that propose research with Indigenous communities.32 Failing to follow these guidelines may produce inaccurate or difficult-to-interpret results and is also unethical. We hope the recommendations we have outlined here provide an introduction to alternative practices as public health researchers endeavor to represent data about Native communities with the dignity and nuance that all people deserve.
ACKNOWLEDGMENTS
R. E. Wilbur was funded by a training grant from the Eunice Kennedy Shriver National Institute of Child Health & Development (NICHD; T32 HD091058). D. R. Gartner receives support as a Health Disparities Scholar through the NICHD’s Loan Repayment Program.
We are indebted to Katherine Crocker, PhD (Kaw Nation of Oklahoma), and Jessica Bardill, PhD, for providing feedback on an early version of this article.
CONFLICTS OF INTEREST
The authors have no disclosures of potential or actual conflicts of interest to declare.
HUMAN PARTICIPANT PROTECTION
This article did not involve human participant research and was therefore exempt from institutional (including tribal) review board review.
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