More than five years after the publication of the CARE Principles for Indigenous Data Governance (CARE), questions around Indigenous Data Sovereignty (IDSov) and Indigenous Data Governance (IDGov) continue to percolate in mainstream discussions about research standards around the world.

But, as CARE is increasingly acknowledged and adopted by policymakers and data actors as guidance for working with Indigenous Peoples' data, experts are taking steps to ensure that users understand that these high-level principles point to regional and local protocols for data governance set forth by Indigenous Peoples, Tribal nations, and Indigenous communities themselves.

“We need to remind people that the CARE Principles should be pointing them to the local and specific protocols of Indigenous Peoples’ communities,” says Native Nations Institute Luce Foundation Postdoctoral Researcher Riley Taitingfong (Chamoru). 

Taitingfong is also the lead author of a new communiqué published by the Global Indigenous Data Alliance (GIDA), titled “CARE Directs Us Home: Prioritizing Indigenous Peoples’ Community Standards.” The brief urges data users to prioritize local standards as defined by Indigenous communities when interacting with Indigenous data, which include information (in any format) about Indigenous Peoples, their lands, resources, cultures, and nonhuman kin. 

“The uptake of CARE is great,” Taitingfong says, “[But] remember that, when you're using CARE, you need to be looking for the specific regional or community-level principles that apply to the data you're working with.”

Acknowledgment vs. Action

In some ways, one could argue that the CARE Principles – which assert that Indigenous data should provide Collective Benefit to the Peoples they relate to; that those Peoples should maintain the Authority to Control their own data; and that such data should be collected, managed, and utilized in a Responsible and Ethical manner – have been so successful that their intent can be obscured by their apparent simplicity. Put differently, some have claimed to follow the CARE Principles without doing the relationship-building work true implementation requires. 

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“We’ve seen significant uptake of the CARE Principles—across data actors for example, by nation-state governments, research institutions, geographies, and in other contexts,” says Stephanie Russo Carroll (Ahtna). Carroll is a co-author of the CARE Principles, co-founder and leader of the Collaboratory for Indigenous Data Governance, associate research professor at the Native Nations Institute, and associate professor at the Mel and Enid Zuckerman College of Public Health. “But that widescale adoption has perhaps led some data actors to assume that the CARE Principles are the finish line for IDSov when in fact they are just the starting block,” says Carroll. 

Originally published by GIDA in 2019, Taitingfong explains that one of the biggest misconceptions around CARE is that the Principles offer a complete framework for IDSov and IDGov. “CARE is intended to be high-level guidance,” she says. “It can give you direction about how to interact with Indigenous data in ways that respect Indigenous rights, but the Indigenous Peoples to whom the data relate need to be the ones telling you what that looks like in practice.”

Thus, the communiqué arrives in a climate where CARE’s visibility has sometimes worked against its intent. Taitingfong notes a troubling trend: institutions and individuals sometimes attempt to “adopt” CARE without taking further steps to understand or implement local Indigenous governance protocols. 

For instance, Canadian researchers engaging the CARE Principles should also know that First Nations Peoples in the country created their own data governance Principles known as OCAPⓇ nearly two decades before CARE existed. Similarly, Australian researchers desiring to work with Aboriginal Peoples should also be aware of the Maiam nayri Wingara Principles created by the Maiam nayri Wingara Indigenous Data Sovereignty Collective and the Australian Indigenous Governance Institute in 2018. These are just two examples of data principles that reflect grounded, community-specific protocols created by Indigenous Peoples. They and other local and regional IDSov and IDGov resources are listed on page two of the communiqué for easy reference with more being added as they are released to the public.

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“People can just sign on to something without actually changing their behavior,” Taitingfong says, drawing a parallel to land acknowledgments as symbolic gestures that increasingly lack substance and meaning when they are not paired with more concrete action. 

To guard against this sort of superficial uptake, scholars at GIDA and affiliated organizations like the Collaboratory for Indigenous Data Governance (of which Taitingfong is also a member) are developing tools like the new communiqué and the CARE Data Maturity Model, which is still under development, to offer what Taitingfong refers to as “very specific, concrete things that [institutions] can do to implement Indigenous governance over data.” 

Flexibility in an Ever-Shifting Landscape

The goal of recent publications like the new communiqué and the CARE Data Maturity Model is not for IDSov and IDGov practices to become a series of boxes on a compliance checklist. 

In fact, Taitingfong says it would be impossible to create a standardized checklist that worked for every research project in every scientific field impacting every Indigenous community around the world. And trying to do so, she insists, misses the point. 

At the heart of CARE is a demand for Indigenous authority over data—not just ethical reflection, but political transformation. “Authority to control is actually the heart of CARE,” Taitingfong explains, “We really don't want it to become a checkbox thing.” Instead, she says it’s about “building relationships and policies that are adaptable over time… [because] Indigenous communities’ data needs, interests, and rights are dynamic.”

As IDGov principles become increasingly central to research and related laws and policies, the stakes for Indigenous communities are only increasing in parallel with the volume of unregulated Indigenous data circulating amongst data actors, including machines and artificial intelligence, around the globe. The extent to which CARE continues to function as a living framework depends on how institutions and Indigenous Peoples respond to the challenge of implementation.

The hope, Taitingfong says, is that research institutions stop treating CARE as a passive principle and start using it as an active guide. “Good data stewardship,” she emphasizes, “means committing to building and sustaining relationships with the communities to whom data relate.”

And that, as the title of the new communiqué implies, is what it means to let CARE direct you home.

Read “CARE Directs Us Home: Prioritizing Indigenous Peoples’ Community Standards” here.