Ethical Research with Indigenous Peoples: Doing Right by Respecting Native Rights

A new paper published in the journal Frontiers in Research Metrics and Analytics provides concrete guidance for researchers and research institutions on how to effectively and ethically engage with Indigenous Peoples and Native nations for the purpose of conducting research.

The paper, titled “Indigenous Peoples and Research: Self-determination in Research Governance,” draws from legislation and policy governing research practices that were enacted by roughly two dozen Tribes and Native nations since the 1980s.

Authored by Native Nations Institute (NNI) Senior Researcher and Assistant Research Professor in the UArizona Mel & Enid Zuckerman College of Public Health Ibrahim Garba along with several fellow members of the Collaboratory for Indigenous Data Governance, the text of the document says it “aims to move the conversation [on Indigenous Data Sovereignty and Indigenous Data Governance] from principles to practices” by extending the 2007 United Nations Declaration on the Rights of Indigenous Peoples – which officially reaffirms the right of Indigenous Peoples to “freely determine their political status and freely pursue their economic, social and cultural development” – to data management and research practices.

The paper is a logical next step in the Indigenous Data Sovereignty (IDSov) movement following the release of documents like the “CARE Principles for Indigenous Data Governance” and the “12 Indigenous Peoples’ Rights in Data” (published by the Global Indigenous Data Alliance in 2019 and 2023, respectively), both of which outlined high-level tenets intended to shape research and data governance practices for projects that take place on Tribal lands, involve the participation of Tribal individuals and partners, or otherwise draw from Indigenous Peoples cultures, languages or knowledges.

The Origins of Tribal Research Legislation

Concerns about ethical practices grew in the 1990s in response to a litany of research projects that aimed to either exclude or exploit Indigenous Peoples but depended on the participation of those Peoples for their success.

Examples include:

• A series of three major national population surveys designed by the Canadian federal government in 1996 which sought to exclude participation by First Nations Peoples living on reservations.
• A study on diabetes among members of the Havasupai Tribe between 1990-1994 which resulted in the unauthorized reuse of blood samples for additional studies that were not permissioned by individuals nor the tribe.
• The controversial Human Genome Diversity Project which began in the 1990s and sought to map the ancestral migration of human populations by examining the DNA of Indigenous Peoples around the world.

These and myriad other extractive research projects – coupled with growing calls for all scientific data to be openly shared and accessible to all researchers who might want to use them – led many Tribal Nations to become wary of western research and to question the intentions of scientists, in general.

As a result, some Tribal Nations began passing laws to govern research efforts that took place on sovereign Tribal lands or otherwise involved their enrolled citizens, including an outright moratorium on all genetic research involving citizens of the Navajo Nation that was passed in 2002 and remains in place today.

Barriers to Ethical Research

As Garba points out, the extent to which Indigenous Peoples can currently exercise their inherent right to self-determination over their own data, land and knowledges can be limited by factors like whether or not research takes place within reservation borders, as well as by the general lack of federal and institutional guidelines in existence on the subject.

Though some national guidelines specifically for research projects involving Indigenous Peoples and the ownership of data are in place in Canada, Australia and Aotearoa New Zealand, Garba says “that does not exist in the U.S.”

Similarly, though some U.S. universities (like UArizona) have put Tribal Consultation policies in place around research, proponents of IDSov and Indigenous Data Governance (IDGov) principles say that such policies often don’t go far enough, and that their existence is generally the exception rather than the rule. And, says Garba, without institutional acceptance of IDSov and IDGov principles, seeing them enacted widely will be difficult, if not impossible.

“Researchers may want to do good,” Garba says, “but if the institutions they work at don't have policies that support them (to conduct ethical research), it's unlikely to happen.” 

Consulting with Tribes or participating in additional research review processes can be more expensive and take longer to complete than research that is conducted extractively, for example, which could lead to less ethical projects being favored by funders or other supporting organizations over projects that take a more respectful and inclusive view of IDSov and IDGov practices.

Expanding the Impact of IDSov Work

Now that the basic principles of IDSov and IDGov have been identified and established, Garba says that the question is now one of, “How do you move these abstract principles to different governance contexts?”

That’s where Garba’s work of meticulously examining a sampling of current Tribal research codes comes into play.

“Indian Country has already said what they want,” says Garba in reference to the codes already on the books. “So the Tribes are already doing this where they have sovereignty… The work we're doing [now] is to move toward places where sovereignty is limited or requires negotiation. In other words… to try to get institutions to make policies that make those principles real.”

Garba and his colleagues have seen positive movement. Some organizations, like Earth Science Information Partners and the Institute of Electrical and Electronics Engineers, are currently in the early stages of developing accountable Indigenous data standards, policies and practices, but the work of seeing IDSov and IDGov principles applied broadly to mainstream research has only just begun.

Ultimately, the hope is that this and future papers arising from Garba’s assessment of Tribal Research Codes will help research institutions and, eventually, state and federal lawmakers to do what Garba calls the “translational work” of encoding Indigenous Peoples’ data rights into laws and policies in a way that makes ethical research practices the standard rather than an abstract ideal.

It’s an ongoing struggle that will be the subject of much discussion and deliberation at the upcoming IDSov & IDGov Summit, Building Action and Power, which will take place on the lands of the Pascua Yaqui Tribe and within the homelands of the Tohono O’odham Nation in Tucson, AZ in April 2024. 

Read “Indigenous Peoples and Research: Self-determination in Research Governance” in full here