Recently, my DATAVERSITY colleague Mark Horseman shared that he’d been getting a lot more questions about Indigenous data sovereignty. We both agreed it would make a great topic for this month’s column. 

What is Indigenous data sovereignty, why does it matter, and how can we learn more about it? 

To answer these questions, it helps to contextualize the idea of data sovereignty in the historical context of data colonialism. Data sovereignty makes sense in light of a past history that has been oppressive to certain groups, such as Indigenous peoples.

Before moving further into this topic, I think it’s important for me, as an non-Indigenous person, with no direct lived experience, to acknowledge that my understanding of this topic is informed by the work of those with lived experience. It’s through courses like OCAP® offered by the First Nations Information Governance Centre, books, talks, and other resources that I’ve come to understand this topic. I will include references to all of these resources so that you might also benefit directly from them.

“Research Is a Dirty Word”

Several years ago, while I was doing research about data ethics, a professor suggested a book to me, “Decolonizing Methodologies: Research and Indigenous Peoples” by Linda Tuhiwai Smith. It was an eye-opening read on many levels and a good primer for understanding the background and historical context for data sovereignty. Smith writes:

“From the vantage point of the colonized, a position from which I write, and choose to privilege, the term ‘research’ is inextricably linked to European imperialism and colonialism. The word itself, ‘research’, is probably one of the dirtiest words in the indigenous world’s vocabulary. When mentioned in many indigenous contexts, it stirs up silence, it conjures up bad memories, it raises a smile that is knowing and distrustful.”  

This perspective is very different from Euro-centric western notions of research. We tend to fetishize research as a positive thing. It’s how we will advance our scientific knowledge. We don’t tend to think of the downsides or impacts of research because much of the time, we’re not the direct subjects of research. The research is also being conducted in the context of our western cultural and legal context.

We can think of the process of research as inextricably linked to gathering data. The book goes on to outline numerous instances where the research process of data collection and data processing have resulted in harm to various Indigenous communities. 

The Havasupai Tribe vs. University of Arizona

One story that stands out for me is that of the Havasupai tribe in Arizona. Members of the tribe had consented to allow researchers from the University of Arizona to collect genetic data (DNA) for research purposes related to Type 2 diabetes. Consent was given because Type 2 diabetes was a problem that the community was experiencing and so granting this data collection and use made sense in this context. However, the university researchers took this as blanket consent to then go on to use the data for a range of other research projects, including some that began to challenge the tribe’s historical understanding of itself and were deeply in conflict with the tribe’s values. Shockingly, tribal members found out about this purely by accident!

This talk from Carletta Tilousi and Dianna Sue Uqualla of the Havasupai community goes into much more detail and is helpful in understanding the fuller context of this case. There were important spiritual and cultural reasons why the blood samples collected from tribal members needed to be returned, that extend well beyond the idea of these being merely data for research.

It’s important to know this is a fairly recent case. The research took place in the 1990s, the lawsuit was filed in 2004 and it was settled in 2010. This is recent history, but it’s also emblematic of the bigger pattern of research like this that has been taking place for a very long time. Other countries, such as Canada, New Zealand, and Australia, have similar stories.

What Is Data Sovereignty?

Put simply, data sovereignty relates to who has the power to govern data. It determines who is legally empowered to make decisions about the collection and use of data. We can think about this in the context of two governments negotiating between each other, each having sovereign powers of self-determination. Indigenous governments are claiming their sovereign rights to their people’s data. 

On the one hand, this is a response to the atrocities that have taken place with respect to data gathered and taken beyond the control of Indigenous communities by researchers, governments, and other non-Indigenous parties. Yet, as data becomes increasingly important, many countries are seeking to set regulatory standards for data. It makes sense the Indigenous governments would assert similar rights with respect to their people’s data.

Ownership, Access, Control, Possession 

In Canada, the First Nations Information Governance Centre (FGNIC) is an independent not-for-profit organization whose early roots harken back to health research. The FGNIC has developed a framework for data governance called OCAP® – which stands for ownership, access, control, and possession. They provide training in the OCAP® framework (it’s a great course!), which takes an expansive and holistic approach to data. As their website explains:

“Data in this context encompasses data from First Nations, including languages, cultures, knowledge, stories, songs, and ceremonies, data about First Nations such as demographics, housing, health, economies, labor, education, and data on or about First Nations lands and resources, which includes waters, medicines, and animals.”

FNIGC

Data sovereignty is an important part of Canada’s Truth and Reconciliation calls to action. The FNIGC governs the relevant processes for those seeking to work with First Nations in Canada to appropriately access data. 

The United States Indigenous Data Network and other international organizations serving Australia, New Zealand, and certain European countries provide similar kinds of training, knowledge sharing, and data governance protocols. 

More Resources

In addition to already noted websites and organizations, there is a wealth of books, articles, videos, podcasts, and other content available. Here are some of my favorites: 

• Sacred Civics: Building Seven Generation Cities (book)
• Decolonizing Methodologies: Research and Indigenous Peoples (book)
• Indigenous Data Sovereignty: Toward an Agenda (book)
• The Costs of Connection (book) 
• Databack (e-book)
• MyData Canada: Are Individualistic Data Policies and Designs Fuelling Digital Colonialism? (video) 
• Indigenous Peoples, Data, and Intellectual Property Rights (video)
• What is Indigenous data sovereignty and why does it matter? (article)
• Decolonize Data (article)

Send Me Your Questions!

I would love to hear about your data dilemmas or AI ethics questions and quandaries. You can send me a note at hello@ethicallyalignedai.com or connect with me on LinkedIn. I will keep all inquiries confidential and remove any potentially sensitive information – so please feel free to keep things high level and anonymous as well. 

This column is not legal advice. The information provided is strictly for educational purposes. AI and data regulation is an evolving area and anyone with specific questions should seek advice from a legal professional.