Federal, state, Tribal, and local governments have a duty to protect the health and welfare of their constituents.Reference Gostin and Wiley 1 With this duty comes a broad range of governmental public health powers, from issuing isolation and quarantine orders to closing borders during a public health emergency.Reference Hoss 2 While the scope of these powers has been tested in federal courts in recent years, government entities still maintain broad authority to act in the interest of public health.Reference Parmet 3 Yet, since the late 1800s, when governments established and funded public health departments to prevent and control the spread of disease, 4 Tribal governments have been almost entirely excluded from the resources necessary to exercise their inherent public health authority. In addition to the absence of any meaningful public health funding, Tribal governments have lacked the most basic access to data necessary for the prevention and control of infectious and noninfectious conditions. 5 A recent example of this disparity occurred during the COVID-19 pandemic when lack of access to data significantly hampered Tribes’ ability to respond to outbreaks in a timely manner.Reference Hoss 6 Meanwhile, other governmental and nongovernmental entities have been the primary collectors and managers of Tribal data,Reference Rodriguez-Lonebear, Kukutai and Taylor 7 including sensitive health data regarding Tribal members, such as sexually transmitted diseases, pregnancies, and infant deaths, often without a Tribe’s knowledge, consent, or meaningful say in how their community’s data is used or protected. 8 This imbalance creates a cycle of data dependence in which a Tribe must rely on government agencies or other third parties for access to their own data, which is often located in systems that lack consideration for the Tribe’s values and priorities regarding their data. 9
Over the past several years, the Washington State Department of Health, several Tribes, and the American Indian Health Commission (AIHC) engaged in a collaborative effort to examine and identify the Department’s responsibilities as stewards of Tribal data.Reference Monares and Valdillez 10 In early 2025, these efforts culminated in the Tulalip Tribes and the Washington State Department of Health signing a historic Tribal data-sharing agreement that significantly changes the exclusionary approach of federal and state governments in limiting or altogether barring Tribal nations from data access. 11 The agreement is built upon the AIHC Model Data Sharing Agreement and signals a new shift for the agency in stewarding Tribal data in a manner that protects Tribal data from unwanted disclosure and use. 12 Central to the agreement is the principle that Tribes possess the inherent sovereign authority to protect the health and welfare of their people through the use of public health data. 13 The agreement also reflects the Washington State Department of Health’s commitment to honoring Tribal sovereignty.
This article examines how other jurisdictions can utilize the Washington example to develop data-sharing agreements that strengthen Tribal data sovereignty. Tribal data sovereignty is a broad, comprehensive term that includes various principles, including the right of a Tribe to collect and manage their own data, as well as the responsibility of other jurisdictions to make considerations for a Tribe’s culture, values, and goals in the exchange and use of Tribal data.Reference Rainie, Schultz and Briggs 14 This article will also highlight best practices for the implementation of Tribal data sovereignty principles that can lay the groundwork for successful cross-jurisdictional data-sharing agreements.
Tribal Governments Possess the Inherent Authority to Exercise Public Health Powers
For decades, federal and state governments have crafted public health laws, policies, and systems without regard for Tribal nations. Failure to recognize Tribal public health sovereignty and jurisdiction can have devastating consequences for Tribes and the communities they serve. For example, the exclusion of Tribal jurisdictions in vaccine distribution led to critical vaccine shortages and even deaths during the H1N1 pandemic of 2009.Reference Erb, Peterson and Sunshine 15 Similarly, without public health data about disease outbreaks within their jurisdictions, Tribes have experienced unwanted delays in standing up public health responses.Reference Erb 16
When crafting Tribal data-sharing agreements, federal, state, and local agencies must acquire a basic understanding of Tribal public health sovereignty and jurisdiction. First, these entities must acknowledge that Tribes possess the authority to govern their people. For Tribes, this means a responsibility and a duty to care for the health and safety of their communities and the ability to exercise their self-determination without interference from federal, state, and local governments. Second, a Tribe’s public health powers are “inherent,” and the source of this power differs from that of federal and state governments. 17 The federal government’s public health powers are largely derived from the US Constitution under the doctrine of implied powers, while state government public health powers are derived from the 10th Amendment.Reference Gostin and Wiley 18 Local health departments derive their powers via delegation of the police powers by their state constitutions.Reference Pal 19 In contrast, the source of a Tribe’s government powers comes not from another government, nor from a supreme document,Reference Albert 20 but solely from the Tribe itself, a sovereign nation, which came into existence long before these entirely separate structures.
Cross-Jurisdictional Data Sharing in Washington State
The legal framework for a Tribe’s authority to exercise their public health powers determines how Tribal data is shared and protected. The misapplication or disregard of a Tribe’s inherent legal rights to data can significantly impede public health efforts. During the COVID-19 pandemic, several Tribes in Washington state reported challenges with accessing the Washington Disease Reporting System (WDRS) to assist with their COVID-19 case reporting. The Washington State Department of Health granted only certain Tribes limited access to WDRS.Reference McKee, Schmitz and Erb 21 This limitation created significant administrative burdens for Tribes. As one Tribe shared, “‘Reporting was a huge burden. I really appreciated [the eventual] access to WDRS but it was read-only. I was having to hand write all our reports.’”Reference McKee 22 Tribal leaders in Washington state advocated for Tribes to have direct access to data located in state databases, including former Upper Skagit Tribes Vice Chair Marilyn Scott, who shared that “Tribes having direct access to their own data is critical for Tribal governments to make decisions for the protection of our citizens within our jurisdictions.”Reference McKee 23 The AIHC’s Tribal COVID-19 Pandemic After Action Report recommended that the Washington State Department of Health Tribal data-sharing agreements include access to state disease data systems that is at least equal to access granted to local health jurisdictions, including both read and write access to WDRS.Reference McKee 24
What followed was a multiyear effort to create a template Tribal data-sharing agreement for the Washington State Department of Health. A Tribal data sovereignty subcommittee was formed and comprised of Tribal leaders and Tribal staff under the guidance of the Governor’s Indian Health Advisory Committee (GIHAC). 25 The subcommittee, facilitated by the AIHC, developed and formally approved the Tribal Data Sharing Agreement Checklist, which includes Tribal data sovereignty principles for state agencies to include in Tribal data-sharing agreements. Along with this resource, the AIHC developed the AIHC Model Tribal Data Sharing Agreement, which incorporates the committee’s recommended provisions. These provisions can be used by any federal or state agency seeking to honor Tribal data sovereignty in their data-sharing agreements. 26 The agreement resulted from a collaboration of Tribal staff, public health leadership, public health policy experts, epidemiologists, and attorneys. 27
Subsequent to the development of the Tribal Data Sharing Agreement Checklist and the AIHC Model Tribal Data Sharing Agreement, the Washington State Department of Health finalized their template Tribal data-sharing agreement in partnership with the Tulalip Tribes. In 2025, the Tulalip Tribes and Washington State Department of Health executed the first Tribal data-sharing agreement in the state after a yearlong period of negotiations and efforts to achieve a shared understanding. 28 The Washington state secretary of health noted the great significance of this agreement, reflecting, “This is a journey we believe in so strongly. Why? Because when you share and provide data, when you give people access to their own data, that raises the visibility of health issues — the challenges and solutions that must be made.”Reference Valdillez 29 For secretary Theresa Sheldon of the Tulalip Tribes, this historic agreement finally honored the governmental duty of a Tribal nation: “Our responsibility is the wellness of our people. That responsibility that we carry is much bigger than those in this room, because we are constantly looking out for the next seven generations, and the responsibility for their health and their wellbeing.”Reference Valdillez 30 With this agreement in place, Tribes in Washington can now formalize cross-jurisdictional data-sharing in a manner consistent with Tribal data sovereignty principles.
Eight Key Components for Tribal Data-Sharing Agreements
The GIHAC Tribal Data Sharing Agreement Checklist provides eight key components for governmental and nongovernmental entities to include in their data-sharing agreements with Tribes. 31 The sections below examine each of these components and provide recommendations for including them in Tribal data-sharing agreements.
1. Tribes Possess the Inherent Authority to Collect, Manage, and Share Their Data
Countries across the world exercise data sovereignty by controlling how their data is shared or used.Reference Tsosie 32 How a country controls their data is based upon that individual country’s norms and values.Reference Tsosie 33 As a result, data sovereignty appears differently across countries and certainly among Tribal nations.Reference Tsosie 34 While a federal or state agency may categorize certain data as “less sensitive,” a Tribe may view it as “highly sensitive” based on their cultural preservation efforts, and their “distinctive histories, legal systems, and customary norms.”Reference Tsosie 35 Tribal data sovereignty includes the right of a Tribal government to determine the level of sensitivity of data and what should be the minimum protections for that data. Ultimately, this right means a Tribe being able to decide “what information is collected under what circumstances and then being able to determine how it is used and for what purposes.”Reference Snipp, Kukutai and Taylor 36 The Centers for Disease Control and Prevention has recognized the rights of Tribes as governments to “require the collection, management and sharing of information for public health purposes.” 37
However, many systemic barriers exist for a Tribe to generate and use their own data. These impediments to Tribal data sovereignty result in Tribes often being dependent on data located in federal, state, and local datasets.Reference Tsosie 38 While Tribes often have a need to access this data,Reference Erb 39 existing data is “not necessarily accurate or relevant to the needs of [T]ribal communities.”Reference Tsosie 40 Developing and executing Tribal data-sharing agreements is a crucial component of recognizing a Tribe’s inherent authority to control their data and strengthening self-determination. Tribal data-sharing agreements should include language to reflect a Tribe’s status as a public health authority and require the federal or state agency “to honor and treat Tribes as public health jurisdictions with all the public health powers that exceed those of non-governmental public health authorities.” 41
2. Tribes Retain Ownership of Their Data Even When Located in Federal, State, or Local Datasets
Who owns certain data and what rights are attached to that ownership are important questions that any effective data-sharing agreement must address. Data ownership is defined as having rights and control over data.Reference Offor 42 An entity’s exercise of authority and control over data assets is referred to as “data governance.”Reference Abraham, Schneider and Brocke 43 A Tribe exercises its data governance when it asserts its ownership rights to control the use or reuse of data by third parties.Reference Tsosie 44 It is important to note that, while a federal or state agency may claim ownership to data located in their datasets, data can have multiple owners “when either people, groups, individuals, enterprises or entities have rights and control over them.”Reference Offor 45 Thus, a Tribe’s ownership rights to data continue to exist even when the Tribe’s data is located in federal or state agency databases.Reference Ross 46
As owners of their data, Tribal governments must be “central participants in decision-making about data sharing with state, local and federal governments.”Reference Tsosie 47 Federal and state Tribal data-sharing agreement ownership language should clearly state that Tribes maintain ownership over their data located in federal or state datasets and that such ownership may not be transferred to third parties. 48 Including such language is consistent with the Tribal data sovereignty principle that Tribes possess the inherent authority to exercise ownership over their data. 49
3. Tribes Have the Right to Informed Consent on How Their Data Is Used or Shared
When a Tribe’s data is located in a federal or state agency’s database, the agency has a responsibility to ensure that the Tribe has informed consent on how their data is used. 50 The Washington State Department of Health template data-sharing agreement recognizes a Tribe’s right to informed consent “on how their data, including, but not limited to, protected health information about Tribal members, is used or shared with third parties” 51 and requires the agency, as a general rule, to obtain the Tribe’s permission when publishing, reporting, sharing, researching, or analyzing a Tribe’s data located within the agency’s datasets. 52
A Tribe’s ownership interest continues to exist when the Tribe’s data is aggregated with other data. 53 While some governments consider aggregated data to be less sensitive, such data can carry significance for a Tribe when the data is associated with the health information of their community members. 54 The Tribe “has a strong interest in exercising its sovereignty to protect the interest of its members and some [T]ribal leaders might even consider this a sacred responsibility.”Reference Tsosie 55 Aggregated data that contains Tribal data presents practical issues for a federal or state agency providing informed consent on the use of a Tribe’s data. Aggregated data may have multiple Tribes’ data without the ability to determine which Tribes are included in the dataset. Some Tribes who may have data in another government’s dataset may favor the need for more specific and disaggregated data as a means to implement targeted public action. Conversely, other Tribes may oppose disaggregated data based on a concern for certain data being attributed to their community in a manner that perpetuates stigma. To further complicate the issue, states may have policies around small numbers 56 or overly broad public records acts 57 that do not exempt Tribal data from being shared. To address these issues, federal, state, or local health agencies seeking to publish or report on health data that concerns Tribes or American Indians and Alaska Natives can seek Tribal input through formal, meaningful consultation or through Tribal data sovereignty committees. 58 Tribal engagement and consultation can provide context to multiple Tribes regarding the nature of a report utilizing aggregated data.
4. Tribes Must Have Equal or Greater Access to Data as Other Jurisdictions
An essential function of any public health department is assessing and monitoring population health. Public health surveillance informs a government’s or health department’s decision-making regarding future public health actions. Without access to data, a government cannot perform this key function nor move the needle in improving the health and well-being of their community. Yet federal, state, and local governments have widely excluded Tribal governments from accessing Tribal data located in other governments’ datasets. When Tribes do not have the same or greater access to public health data as other governments, they are “marginalized from engaging in the full breadth of their public health authority,” and “Tribal citizens, in turn, are denied the opportunity to fully engage with and be served by their Tribes.”Reference Hoss 59 Federal, state, and local health agencies must ensure that Tribes have the same or enhanced access to public health data as other public health jurisdictions and provide the necessary technical assistance to facilitate that access. 60
5. Federal and State Agencies Must Consult and Engage with Tribes on Use of Their Data
Historically, federal and state agencies have had few to no procedures for consulting and engaging with Tribes on the collection, management, and use of their data. Tribal consultation “is pivotal to ensuring effective health policy, including data surveillance policies.”Reference Hoss 61 The Presidential Memorandum on Uniform Standards for Tribal Consultation, issued November 30, 2022, defines Tribal consultation as “a two-way, Nation-to-State exchange of information and dialogue between official representatives of the State and of Tribal Nations regarding state policies that have Tribal implications.” 62 Sharing and protecting Tribal data in a manner consistent with Tribal data sovereignty requires federal and state agencies to “meaningfully consult, engage, and/or partner with Tribes on how and when [federal and] state government agencies share[s] Tribal data with third parties, and how it analyzes, reports, or interprets Tribal data.” 63 Public health agencies should develop processes that allow Tribes to be continuously informed about the uses of their data and receive Tribal input. 64 For example, in Washington state, government-to-government practices frequently include issuing “Dear Tribal Leader Letters” 65 to inform Tribes of potential Tribal impacts from proposed state policies or actions, conducting formal consultations, 66 and creating a Tribal data sovereignty committee. 67
6. Tribes Must Be Considered Equal Partners in Data Projects
“Meaningful partnership” between Tribes, federal, state, and local health agencies is essential to advancing Tribal data sovereignty.Reference Ross 68 Tribal data-sharing agreements and policies should include language designating Tribes as “equal partners in the design and implementation of data projects that involve their data or interests.”Reference Ross 69 This governmental framework enables governments to honor Tribal sovereignty and build trust.Reference Millam 70 Partnerships with Tribes can improve accuracy and relevance of Tribal data by relying on the expertise of Tribes to inform public health agencies on “clear and defined terminology” that “accurately reflect[s] the population.”Reference Rhodes 71 This expertise can “bring culturally based understanding of data to discussions with partners.”Reference Rhodes 72 Public health agencies should also work collaboratively with Tribes to identify and develop population-based projects to support public health functions of both Tribes and the respective agency. 73 To achieve success in these projects, agencies must ensure Tribes have the ability to access and track their data located in agency datasets. Former Tribal leader and Tribal health clinic director Steve Kutz has emphasized that “keeping track of data locally at the Tribal level is a foundational part of public health.”Reference McKee 74
7. Tribal Data Must Be Adequately Secured and Protected
A Tribe’s right to protect their data by ensuring their data is secure is a key component of data sovereignty.Reference Tsosie 75 Tribal data located in a federal or state database is a shared resource between the Tribal government and the governmental agency.Reference Tsosie 76 Governmental agencies should collaborate with Tribes in strengthening privacy and security with a focus on “data access controls, encryption standards, data sharing agreements, data storage, retention, destruction, and ongoing risk assessments.” 77 Tribes should be made aware of any privacy risks or data breaches that may include the data of their people. 78
8. Tribes’ Access to Data Supersedes Third-Party Access and Use of Tribal Data
Despite two hundred years of US Supreme Court case law recognizing the authority of Tribes to govern the health and welfare of their people, 79 federal, state, and local governments continue to deny Tribes access to public health resources such as data that is equal to access afforded to other jurisdictions.Reference McKee 80 Withholding resources from Tribes is often justified by racist assumptions of incompetency or incapacity of a Tribe to administer the resource or by the Tribe not having an official “public health department.” These rationales are contrary to Tribal sovereignty and jurisdiction.Reference McKee 81 Relying on these erroneous justifications, public health agencies often share Tribal public health data with entities who are not the Tribe, such as a local health jurisdiction or a nongovernmental organization, while at the same time withholding the same information from the Tribe.
Failure to prioritize Tribes as the primary recipients of their own data can result in the delay or complete denial of critical public health data being shared directly with Tribal governments.Reference Hoss 82 Timely sharing of data means a Tribe can more effectively use their governmental powers such as issuing non-pharmaceutical mandates or determining vaccine priority populations. Federal, state, and local health agency policies and agreements should include language that provides automatic recognition of Tribes as public health authorities whose rights to access data are “superior to access and use of data by third parties.” 83 This includes sharing protected health information with Tribes for the purpose of preventing or controlling disease, injury, or disability. 84
Next Steps
“Data is the new oil” 85 is a frequently used metaphor for the growing power that data holds for every industry and governmental segment, including public health. Public health data can detect and predict disease outbreaks, pinpoint the root causes of health disparities, and inform efforts to improve health outcomes and save lives. For Tribes, data sovereignty is more than just a means to controlling a commodity or improving public health. The true purpose of Tribal data sovereignty is to “give life to [T]ribal inherent sovereignty,” which is the “‘effort of Indian nations and Indian people to exercise their own norms and values to structure their collective futures.’”Reference Tsosie, Coffey and Tsosie 86
The longstanding practice of other governments using Tribal data to claim resources such as grant funding to address American Indian and Alaska Native health disparities causes harm to these communities by limiting Tribes’ access to these resources and by attempting to address Tribal issues from the dominant society’s perspective.Reference Tsosie 87 Federal and state agencies have a responsibility to remove the barriers that have stood in the way of Tribes exercising their rights to data and the resources necessary to access and use their data. Tulalip Tribes Chairwoman Teri Gobin has stressed that Tribal governments must no longer be excluded from their data, which will become an even more critical resource in the near future: “For years, paternalism towards Indigenous people has locked [T]ribes out of information gathered from us and about us. We appreciate the Data Sovereignty Principles developed through the Governor’s Indian Health Advisory Committee and the AIHC. Transparency and informed consent are vital to collaboration. Tribes have an inherent right to own data about us and determine how the data is collected, shared, and used.” 88
As federal, state, and local governments look to meaningfully partner with Tribes in data projects, they must build trust and remain open to change and modernization as data systems themselves have been designed in an exclusionary way.Reference Tsosie 89 Moving forward, federal, state, and local health agencies can work to expand and implement Tribal data sovereignty principles in their public health efforts. The Washington state Tribal Data Sharing Agreement “is a wonderful first step towards a respectful relationship that will benefit both public health agencies and the well-being of [T]ribal communities.”Reference Tsosie 90
Acknowledgements
This article received support from the Washington Department of Health.
Disclosures
The authors have nothing to disclose.
