First Nations Information Governance

I’m taking an online course detailing the First Nations principles of OCAP® (Ownership, Control, Access and Possession). There are 7 modules, each one is about 40 minutes

We kick things off with a quote from the Report of the Royal Commission on Aboriginal Peoples Vol 3, p. 498

In the past, Aboriginal people have not been consulted about what information should be collected, who should gather that information, who should maintain it, and who should have access to it …
The information gathered may or may not have been relevant to the questions, priorities and concerns of Aboriginal peoples.

Logo copied from FNIG website

“OCAP® reflects First Nations commitments to use and share information in a way that brings benefits to the community while minimizing harm.”

The Havasupai

This story begins in the 1990s when the Havauspai tribe living deep in the Grand Canyon, were suffering from cases of diabetes and wanted to know why. They sought out research help from Arizona State University. The tribe agreed to provide blood samples to the university. However the blood samples extracted from the members of the Havauspai were later used for experiments far beyond the initial agreement. Here is how National Public Radio (NPR) describes the situation.

“The tribe was suffering from high rates of diabetes and they wanted to know why, so they sought the help of researchers from Arizona State University. The tribe agreed to provide blood samples so the University could test their DNA but what they didn’t know was how extensively their DNA would be used. Researchers looked into mental illness, inbreeding, even migratory patterns that contradicted Havasupai traditional belief.”

Portion of NPR interview with Carletta Tilousi, a member of the Havasupai Tribe

Part of it is it was a part of my body that was taken from me, a part of my blood and a part of our bodies as Native-Americans are very sacred and special to us and we should respect it. And once they obtained that blood sample, my understanding was they didn’t use it for the purpose of diabetes, they used it for other studies.

And that angered me because I was not properly informed nor did I sign any consent form or fully explained to what my blood was being used for. And it was benefiting different people in the university levels as professors have been obtaining their doctor’s degrees and undergraduate students that were graduating with master’s degrees while our people down here, first of all, were not informed of all of those studies but was also lied to from the beginning and I don’t like being lied to. And it wasn’t just myself that did this, it was a lot of people involved that helped with this legal case.