Part 2 in the Indigenous Data Stewardship Series
Many years after the Ktunaxa Nation undertook research to better understand the health of its children, some of those same children – now adults – came looking for their records. They were looking for information about diagnoses made when they were children. But the research records were no longer available to the Nation.
The research had been initiated by the Nation in the early 1990s. Gwen Phillips, Director of Education for the four Ktunaxa communities at the time, supported the Nation to secure funding and firm up university partners for a project to examine fetal alcohol exposure among school-age children. The findings had a big impact. They helped inform the creation of a five-year Community Healing and Intervention Program which built greater understanding of brain development and determinants of health among children.
This was research led by a Nation about Nation needs, and leading to Nation action – not research conducted by researchers based on their own academic interests. Yet, the Ktunaxa Nation’s leadership in the research did not translate into decision-making authority over the data gathered. University partners applied their own research retention schedules rather than deferring to the decision of the Nation. The research records were destroyed.
This decision to destroy the records had deep and lasting consequences for the people who later sought their childhood diagnosis records. This experience deeply shaped Gwen’s career-long commitment to data sovereignty and the principles of OCAP®. “You own your data,” she stressed. “They shouldn’t be doing that. That was your data.”
Institutional Collaborations
Universities, governments, and other institutions have policies governing the information they collect and hold. These policies describe who can access records, how information is protected and secured, how long it is kept, and when it should be destroyed. These rules are critical for protecting personal information and privacy and ensuring information is managed consistently. These policies typically make a critical assumption — that the institution in possession of the information has the authority to make decisions about it.
In the case of the Ktunaxa research project, from the universities’ perspective, the records were research information subject to their own policies, including for retention and destruction. From the Nation’s perspective, this was information about its own children, gathered through research it had initiated, and intended to support the health and well-being of its people. The core issue was whose authority should be recognized in deciding what should happen to the records.
Recognition of Nation authority over their knowledge is an issue that goes beyond just research projects. Nation data and information lives in a broad range of government, service delivery, archives, and academic systems. Each have their own policies for managing information in their custody, which only very rarely recognize the governance authority of the Nation that the information is about.
A Relational Approach
The first blog post in this “Data Stewardship” series focused on the idea that Indigenous data are relational: our data and information are intimately connected to people, places, histories, and responsibilities. These responsibilities represent the unique and distinct systems that Indigenous people have for governing their knowledge. These knowledge systems have existed for generations and are grounded in Indigenous law and managed through governance structures and protocols.
Gwen shared examples of what this knowledge governance looks like for Ktunaxa Nation. In ceremony, certain knowledge and responsibilities are connected to practices that people must first undertake. Other knowledge may be held by particular families, clans or knowledge holders, with established responsibilities for how it is cared for and passed on. These expressions of governance establish who holds what responsibilities and who has authority to make decisions about data and knowledge, including how it can be shared or used.
Institutional information governance, by contrast, is generally organized around the responsibilities and authority of the institution holding the information. Policies establish how information is protected, accessed, retained and used, and often take for granted that the institution itself has the authority to make those decisions.
This is where a relational approach to data governance is again instructive. Recognizing Indigenous governance authority doesn't mean abandoning the responsibilities institutions have to protect information or comply with applicable laws. It means recognizing that their own policies and procedures are not the only sources of authority that matter. We need to be in relationship and recognize one another’s responsibilities. It means that institutions need to work with the Indigenous peoples connected to the information to understand their governance systems, determine whose authority applies, and establish arrangements that reflect that authority.
Sometimes this will involve negotiating new agreements, access arrangements, or adjusting policies and practices. It may require revisiting information that an institution has held for decades and managed a certain way. And it may mean recognizing that decisions an institution has traditionally made on its own should instead be made by, or in partnership with, the Indigenous peoples concerned. Had this approach been taken in the Ktunaxa research project, decisions about the future of the records could have been made with the Nation, recognizing both its authority and the long-term interests of the people the information was about.
Indigenous data sovereignty asks institutions to reconsider a longstanding assumption: that collecting or holding information gives them the authority to determine what happens to it. Indigenous peoples have governed their knowledge since long before contemporary information systems existed. Respecting that authority means entering into new types of relationships and arrangements that make room for Indigenous worldviews and knowledge systems, and make practical exercise of their authority possible.
