Data sovereignty for tribal nations

“Data sovereignty refers to a group or individual’s right to control and maintain their own data, which includes the collection, storage, and interpretation of data,” defines the National Library of Medicine.

It further explains that, “Indigenous data sovereignty refers to the ability for Indigenous peoples to control their data and includes autonomy regarding a variety of data types such as oral traditions, DNA/genomics, community health data, etc. Within the context of transnational Indigenous sovereignty and self-determination movements, Indigenous data sovereignty can be a powerful tool for those whom the data represents, which claims the rights of Indigenous peoples to use and interpret the data in a way that is accurate and appropriate given their circumstances, customs, and communal way of life.”

Understanding data sovereignty in tribal contexts

An article published in TechTarget provides a clearer explanation of data sovereignty in the context of tribal nations. It states, “Data sovereignty is the concept that information that has been generated, processed, converted and stored in binary digital form is subject to the laws of the country in which it was generated. It can be stored in the country where it was created, or it can be stored – but not processed – in another country, under what is referred to as data residency. If data that is resident in another country is processed in that country, it is referred to as data localization. That data must comply with data sovereignty rules in the nation it's resident in and might also have to comply with the laws of the country it was generated in.”

The University of Arizona’s Native Nations Institute explains that, “Indigenous data sovereignty is the right of a nation to govern the collection, ownership, and application of its own data. It derives from tribes' inherent right to govern their peoples, lands, and resources.”

The above statement from the Institute is supported by the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) which affirms that Indigenous peoples have the right to maintain, control, protect, and develop their cultural heritage, traditional knowledge, and cultural expressions.

Why data sovereignty matters to tribal nations

Historical context of data exploitation

“As the first scientists on the American continents, American Indian and Alaska Native people followed various methodologies in the pursuit of knowledge to understand and respond to complex environmental situations,” states Kristine L. Rhodes, Abigail Echo-Hawk, and Denise A. Dillard in Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems

They further state that, "Colonialism and attempts to eradicate Tribal cultures have stolen or at the very least hidden most of the original Tribal data practices in all current public health systems."

Historically, research conducted in tribal communities has frequently benefited external researchers and institutions while providing little to no benefit to the communities themselves. In some cases, this research has actively harmed tribal nations by:

• Misrepresenting tribal cultures and practices
• Extracting and appropriating traditional knowledge without permission or compensation
• Using data to develop policies that undermine tribal sovereignty
• Exploiting genetic information from tribal citizens for commercial purposes
  
  

Cultural heritage and traditional knowledge

For tribal nations, data extends beyond numbers and statistics to include stories, ceremonies, language, medicinal knowledge, and other cultural intellectual property. This information often represents thousands of years of accumulated knowledge and practice. 

Kristine L. and the other authors explain that, “Public health data are most useful when they reflect realities and the strengths of a people. American Indian and Alaska Native well-being is grounded in community values and in Tribal teachings and ways of life that have supported resilience for millenia, such as ceremonies, traditional roles and responsibilities, and rites of passage; clearly, these are protective factors. Other examples of potentially relevant protective factors include Tribal language fluency and use of traditional foods and medicines. Examining data related to these teachings may provide meaningful insights on the well-being of American Indian communities.”

Self-determination in the digital age

"Tribal data sovereignty and Tribal data governance are powerful tools to improve the accuracy and relevance of data that represent Tribal circumstances, customs, and worldviews,” states the authors of Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems

Data sovereignty enables tribal nations to:

• Make informed decisions based on their own data
• Create internal policies that reflect community values and needs
• Control how their information is represented to the broader world
• Ensure that research conducted in their communities serves tribal interests
• Protect sensitive information from exploitation or misuse

Current challenges in tribal data sovereignty

"Current methodologies fail to accurately capture data on American Indian and Alaska Native populations, resulting in inaccurate and even harmful data outcomes,” explains Kristine L. Rhodes, Abigail Echo-Hawk, and Denise A. Dillard

A resource on the Tribal Data Sovereignty and the Critical Role of Data in Public Health Governance provided three major barriers to tribal data sovereignty and tribal jurisdiction:

1. Exclusion of Tribal nations from decision‐making/input on federal and state government use of tribal and AI/AN data.
2. Lack of federal and state data sharing agreements that protect tribal and AI/AN data and recognize Tribal ownership in data about their Tribe and their people.
3. Lack of federal and state government mechanisms to provide Tribal nations equitable access to AI/AN data necessary for Tribes to perform their governmental duties.
   
   

Infrastructure and technical capacity

Many tribal nations face challenges in establishing the digital infrastructure necessary for data sovereignty. These include:

• Limited broadband access in rural and remote areas
• Insufficient funding for IT infrastructure and staff
• Gaps in technical expertise for data management and security
• Challenges in integrating traditional knowledge systems with digital platforms
  
  

Legal and jurisdictional complexities

The legal status of tribal nations creates jurisdictional issues in data governance:

• Overlapping federal, state, and tribal regulations
• Varying degrees of recognized sovereignty affecting enforcement capabilities
• Challenges in asserting tribal jurisdiction over data held by non-tribal entities
• Limited precedent for tribal data sovereignty in court cases
  
  

Health data and HIPAA considerations

Healthcare data presents challenges and responsibilities for tribal nations. The Health Insurance Portability and Accountability Act (HIPAA) establishes national standards for protecting sensitive patient health information, but its application in tribal contexts requires careful consideration.

According to Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems, “Tribal public health authority is the basis for government-to-government relations and data sharing with other public health authorities at the federal, state, and local levels. Public health authorities are defined as ‘[A]n agency or authority of the United States, a State, a territory, a political subdivision of a State or territory, or an Indian Tribe . . . responsible for public health matters as part of its official mandate.’ This authority is documented in the Health Insurance Portability and Accountability Act.”

Successful models of tribal data sovereignty

First Nations Information Governance Centre (FNIGC)

Established in 2010, FNIGC is a Canadian non-profit organization dedicated to advancing First Nations data sovereignty. It conducts national surveys, such as the First Nations Regional Health Survey, focusing on health and socio-economic conditions. FNIGC also developed the OCAP principles—Ownership, Control, Access, and Possession—which serve as guidelines for First Nations data governance, ensuring communities maintain authority over their information. 

CARE Principles for Indigenous Data Governance

Developed by the Global Indigenous Data Alliance, the CARE Principles—Collective Benefit, Authority to Control, Responsibility, and Ethics—provide a framework for open data projects to respect Indigenous Peoples' rights and interests. These principles emphasize the role of data in advancing Indigenous innovation and self-determination, complementing existing standards like FAIR data. 

Native BioData Consortium

Co-founded by Krystal Tsosie, the Native BioData Consortium is the first U.S. Indigenous-led biobank. It focuses on genomic and data sovereignty, advocating for Indigenous nations to govern the collection, ownership, and application of their data. The consortium provides technical assistance and training to tribal health facilities, guaranteeing data practices respect tribal sovereignty and comply with regulations like HIPAA. 

Alaska Native Tribal Health Consortium (ANTHC)

The Alaska Native Tribal Health Consortium (ANTHC) manages tribal health data across Alaska while making sure that tribes maintain control over sensitive information. ANTHC facilitates authorized information sharing across a geographically dispersed healthcare system, allowing for efficient and secure data management. The organization also guarantees that tribal health data practices align with federal regulations, such as HIPAA, while upholding the sovereignty of Alaska Native communities in health decision-making. 

The future of tribal data sovereignty

"American Indian and Alaska Native health equity begins with critical shifts in the centering of Tribal knowledge, community values, and data sovereignty as key components of transforming public health systems,” states Kristine L. Rhodes, Abigail Echo-Hawk, and Denise A. Dillard.

Furthermore, "As Tribal public health systems reclaim Tribal data sovereignty and Tribal data governance, they are developing culturally centered indicators to be integrated with all public health data systems."

Emerging technologies and opportunities

• Blockchain: Could provide secure, decentralized systems for managing tribal data ownership and access permissions
• Artificial Intelligence: Raises questions about how tribal knowledge is represented in AI systems, but also offers tools for analyzing community data
• Cloud Computing: Creates new jurisdictional questions but enables scalable data storage and management
• Digital Archiving: Provides opportunities for preserving and protecting cultural knowledge in digital formats controlled by tribal nations
  
  

International indigenous data sovereignty movement

Organizations such as the International Work Group for Indigenous Affairs (IWGIA) play a role in the international indigenous data sovereignty movement by advocating for the rights of Indigenous peoples to control and govern their own data. Established in 1968, IWGIA works globally to protect indigenous rights, document human rights violations, and provide policy recommendations on issues such as land ownership, climate change, and governance. The organization collaborates with indigenous communities to promote self-determination and ensure that data collection, management, and usage align with indigenous values and priorities. Through partnerships with the United Nations and regional human rights bodies, IWGIA helps elevate indigenous voices in global decision-making spaces, strengthening their ability to safeguard their cultural heritage and knowledge systems.

In addition to advocacy, IWGIA publishes research and reports that highlight the challenges and progress of Indigenous data sovereignty efforts worldwide. Their annual publication, "The Indigenous World," provides insights into Indigenous governance and rights, helping inform policymakers, researchers, and communities. By documenting case studies and best practices, IWGIA supports indigenous nations in developing data governance frameworks that align with their traditions while meeting international legal standards. 

Policy and legislative developments

Policy developments that may impact tribal data sovereignty include:

• Tribal provisions in federal privacy legislation
• Indigenous data governance standards in research funding requirements
• Growing recognition of tribal sovereignty in data sharing agreements
• Potential for specific tribal exceptions or considerations in future federal data regulations

At the HIMSS25 conference, which took place from March 3rd to 6th, 2025, in Las Vegas, Kimberly Blackhorse, tribal health data specialist at the Colorado Department of Public Health and Environment's (CDPHE) Office of Health Equity, emphasized the importance of tribal sovereignty in healthcare. Blackhorse pointed out that tribal nations, as independent governments, should have control over the data gathered by, for, and about them. She stated, "They are their own government, and with that comes unique identifiers and deliverables, and we have created an entire team to allow them to have access to those funds that come from the federal government." Blackhorse's team works diligently to implement tribal data sovereignty principles within data-sharing agreements, ensuring that tribes have the authority to determine how their data is viewed, stored, and accessed.

FAQs

What is data sovereignty for tribal nations?

Data sovereignty refers to the ability of tribal nations to control and govern their own data, including collection, storage, and interpretation, in alignment with their cultural values and governance.

What role does HIPAA play in tribal data sovereignty?

HIPAA regulates health information privacy but requires adjustments to respect tribal governance structures and data sovereignty, particularly when tribal health data is involved.

What are some examples of tribal health organizations ensuring HIPAA compliance and data sovereignty?

Organizations like the Alaska Native Tribal Health Consortium and the Native BioData Consortium successfully balance HIPAA compliance and tribal data sovereignty through customized data governance and protection strategies.