Data sovereignty is “the management of information in a way that aligns with the laws, practices and customs of a nation-state in which it is located.” Meaning that the community has the right to control the data that is generated within its jurisdiction and about its people, as well as the autonomy to regulate the collection, storage, processing, and distribution of this data. The Office of American Indian Initiatives and the College of Health Solutions are hosting an event at ASU called "Doing Research in Indigenous Communities," which is focused on understanding the research needs of tribal nations and communities. “Usually, non-Indigenous researchers come to tribal communities with their own research agendas, questions and interests, and we have to flip that back around to make sure it’s the tribes who are driving the research and the questions,” said Krystal Tsosie, an Indigenous geneticist-bioethicist and Assistant Professor in the School of Life Sciences at Arizona State University. Data Sovereignty is a prime example of this– prioritizing the best interests of the community, not only over-commercialization but also over researchers and institutions outside of the community.
In the 1990s, the Havasupai people of North America provided blood samples, handprints, and fingerprints to a research project conducted by researchers from Arizona State University to try and help explain the high incidence of type-2 diabetes among Havasupai. They were told that the blood samples were damaged due to a processing error, but their blood had been saved and shared with other researchers at other labs, where it was used to study schizophrenia and migration. All of this happened without their consent.
Sadly, this is not the only instance of data being shared and research being conducted on people without informed consent, and Indigenous communities have not been the only targets. The Tuskegee Syphilis Experiment started in 1932 and conducted an unethical study on Black men where they were never treated for the disease, even after penicillin was found to be a successful cure in the mid-1940s.
Open data and open access can be a point of contention for many communities. While many Indigenous scholars recognize the opportunities that come with open data, they rightfully want to control what information is shared with the public and why. Governments in the settler states of Australasia and North America have collected large amounts of data on their Indigenous populations to justify systems of oppression. This history of colonization, bias and disregard for Indigenous rights heavily complicates the topic of Open Access for Indigenous communities. Still, Indigenous scholars from all over the world have created principles to facilitate research and promote Data Sovereignty for Indigenous communities.
The CARE principles for Indigenous Data Governance – Collective Benefit, Authority to Control, Responsibility and Ethics– are an international collaboration created to complement the FAIR Principles by encouraging open data while emphasizing the importance of the people. CARE is “people and purpose-oriented, reflecting the crucial role of data in advancing Indigenous innovation and self-determination.”
Other Indigenous scholars have created guidelines specific to their community, establishing and asserting sovereignty over their systems of knowledge. Maori scholars created the Te Mana Raraunga Data Sovereignty Network, which identified six key ways through which to “enable Maori Data Sovereignty and to advance Maori aspirations for collective and individual wellbeing” by
- Asserting Māori rights and interests in relation to data
- Ensuring data for and about Māori can be safeguarded and protected
- Requiring the quality and integrity of Maori data and its collection
- Advocating for Māori involvement in the governance of data repositories
- Supporting the development of Māori data infrastructure and security systems
- Supporting the development of sustainable Māori digital businesses and innovations
Colonialism heavily disrupted and attempted to delegitimize Indigenous peoples’ practices of storing, processing, and distributing their data, but they continued to maintain their right to their knowledge.
Without considering community, discussions regarding open access can easily focus on characteristics of data that will facilitate increased data sharing regardless of historical contexts and power dynamics, perpetuating historical systems of oppression. Open Access is a useful tool in addressing systemic inequality within academia– eliminating barriers to education by making information more accessible and empowering to distribute their work outside of traditional publishing models– but it is not a perfect solution for uplifting all communities. Indigenous populations have had their data collected and distributed without their consent, so researchers must understand this history of trauma and respect the people and nations they are working with– holding themselves and their institutions accountable. Centering “Community over Commercialization” within open access invites Data Sovereignty to this conversation, allowing a fair, equitable, and autonomous exchange of information. Respecting Data Sovereignty does not put you in opposition to Open Access; it simply means that you adhere to informed consent, valuing a community's judgment on the exchange of their information versus sharing to profit or merely for the sake of being open.
Further Reading
- Indigenous Digital Sovereignty Defined
- Native Nations Institute
- Indigenous Data Sovereignty: Healing the Wounds of Data Misuse and Building Better Data Futures
- Strengthening Indigenous Data Sovereignty Around the Globe and at Home in Tucson
- Native Land Information System
- Care Principles for Indigenous Data Governance
- State of Open Data
Read our other posts from this series:
Welcome to International Open Access Week 2023
A 'diamond' in the rough: no cost open access
How can researchers engage in open access/open science?
Open Access Week 2023 next steps
