As universities, governments and other organizations around the world strive to restore balance and achieve reconciliation with Indigenous peoples, the need to rethink the ways we deal with data, information and records emerges as both increasingly imperative and incredibly complex. And while advances in understanding and practice regarding data management have been made, there is still much work to be done to ensure that Indigenous information is gathered, managed and shared appropriately. To this end, IRSI has engaged in a number of initiatives and collaborations aimed at transforming the culture of policies and practices around the respectful and appropriate governance of Indigenous data currently housed at UBC.
In this special, two-part blog post, we take a closer look at the complex web of issues surrounding the stewardship of Indigenous, data, information and records. Part one provides an overview of the topic, including challenges and recent trends. Part two showcases some of the initiatives that IRSI and others are undertaking to find solutions.
What is meant by Indigenous data, information and records?
There are multiple types of data, information and records that pertain to Indigenous people – everything from linguistic recordings to census data, medical information to registries, surveys or court documents to residential school records. Each requires a unique set of ethical and legal considerations and needs to be handled and shared with appropriate care and sensitivity. Some, such as testimonials of residential school survivors, are highly sensitive in nature and need to be considered with the utmost care and respect.
In the context of our work at IRSI to support and facilitate Indigenous research collaborations, we are concerned primarily with data and information collected in research, as well as records created by researchers and the resulting information that is produced and disseminated, such as research findings, reports and journal articles. Again, there is an incredible degree of variety in the formats that research data, information and records can take. It may exist as field notes or drawings, documentation, video and audio recordings, images and more.
- “Data” refers to a tangible or electronic record of raw information (measurements, statistics or information in numerical form that can be digitally transmitted or processed) used as a basis for reasoning, discussion, or calculation and must be processed or analyzed to be meaningful.
- “Research data” refers to data that are used as primary sources to support technical or scientific enquiry, research, scholarship, or artistic activity, and that are used as evidence in the research process and/or are commonly accepted in the research community as necessary to validate research findings and Research data may include experimental data, observational data, operational data, third-party data, public sector data, monitoring data, processed data or re-purposed data.
- “Information” refers to the analysis, collection, classification, manipulation, storage, retrieval, movement and dissemination of information.
- “Records” refers to any recorded information made or received by an organization.
- Indigenous data, information and records can include all of the above, and be both by, and about, Indigenous peoples.
Why is the stewardship of Indigenous data, information and records particularly complex?
When considering the gathering, stewardship, use and dissemination of research data, information and records a plethora of practical, legal and ethical considerations need to be undertaken. Key issues include privacy, authority, access and permissions. There are also considerations related to data analysis; users need to understand how to translate abstract information and culturally specific information into meaningful narratives and solutions.
Historical methods don’t meet today’s ethical standards
When speaking about data that was collected in the past, we need to consider how, when and why, Indigenous research materials were gathered. Institutions like UBC have long histories of research in Indigenous communities, and while strides have been made in recent years to ensure that data is collected ethically and that research engagements are community-led and reciprocal, this was not always the case. Research methods and standards that were once thought to be appropriate may now be radically outdated. In the not-too-distant past, research followed an extractive model and results were often not even shared with the research study’s participants. Permissions were ambiguous and Indigenous peoples were often misinformed, or lacked full understanding, of what they were agreeing to when signing consent forms.
The challenges and ethical issues related to historically collected Indigenous data may be better illustrated with a real-life example. This article in Ha-Shilth-Sa newspaper recounts the experience of several hundred Nuu-chah-nuulth people who participated in a UBC health research study in the 1980’s. The intention of the study was to explore why there was a high occurrence of rheumatic disease in their community. Eager to find a cure for the arthritis and other ailments plaguing themselves and their family members, more than 800 Nuu-chah-nuulth volunteers donated blood samples to the project over a five-year period. Unfortunately, the researcher, Dr. Richard Ward, was unable to correlate the samples to a conclusive finding. Yet, rather than inform the community he simply discontinued contact. Some 15 years later, the community discovered that their blood samples had since been used in multiple genetic anthropology studies, outside both the discipline of the original research and the consent forms they had signed. Since the original story was published, Dr. Ward has apologised to the community and the blood has been destroyed, thankfully allowing the chapter to be closed for participants who objected strongly to their samples to be used without their permission. Nevertheless, the story illustrates an all-too-common outcome of a community-based research project that does not involve the community as collaborators.
Cultural complexities and misunderstandings
Another issue that often arises with archived Indigenous research data is the misinterpretation of findings by non-Indigenous scholars. Lacking the knowledge, wisdom and interpretation of Indigenous partners, and without the necessary historical and cultural context, data becomes meaningless and accuracy of any findings suspect. In the worst case scenario, this form of analysis without context can cause grave harm. Consider, for example, the role of misinformed or misinterpreted data in the country’s former policies of assimilation, child welfare and control.
“Data points are not self-evident facts. They reflect the social, the political and the cultural context in which the data are collected, analyzed and interpreted.”
~ Dr Tahu Kukutai, Te Ritorito, 2017
Even when approached with good intentions, there is a high potential to cause harm when non-Indigenous scholars aim to interpret Indigenous data without the collaboration of appropriate Indigenous partners. Archived research materials may contain traditional and spiritual knowledge that is not intended to be shared widely. Not only can the dissemination of these materials damage the people they were taken from, their richness and depth of meaning is not likely to be translated adequately or accurately.
Trends in Indigenous data management and sovereignty
Globally, the past few decades have seen a movement toward Indigenous data sovereignty, a concept that asserts that data are subject to the laws of the Nation from which they are collected and further that the Nation has the rights to govern their data, including accessing, using and controlling it.
The idea of data sovereignty has been in Canada for some time. Here, the defacto standards for collection, handling and management of First Nations data were established in the OCAP® set of Principles in 1998. OCAP®, which stands for ownership, control, access and possession, asserts that First Nations have control over data collection processes in their communities, and that they own and control how this information can be used.
UBC and other research institutions have also come a long way in the manner in which we engage in Indigenous research projects, including how we collect and manage data. UBC now espouses a collaborative, community-led approach to Indigenous research, one in which Indigenous communities are partners in and direct beneficiaries of the projects they participate in.
Yet despite these shifts, there are still challenges to the ideal of Indigenous data sovereignty. Even as Indigenous peoples are striving to reclaim control over their data and records, the world is experiencing a data revolution, with digitalization opening channels for even greater sharing and easier access to information of all kinds. Governments, institutions, non-profits and private businesses are pushing to remove barriers to data sharing, and that’s putting more pressure on Indigenous interests to ensure that the necessary protections are in place for their data, records and information. Once digital data is out there, it can’t be retracted.
Moving from challenges to solutions
When it comes to stewarding Indigenous data, records and information, the answers are not clear and there is double-edged sword at play. On one hand, Indigenous data misused and misinterpreted can inflict harm. On the other, when properly handled, data has the power to support positive change, improve lives and build capacity.
In the conversation about Indigenous data, however, a few things are clear and undeniable. The first is that Indigenous data is data by and about Indigenous people. Another is that the appropriate authorities and stewards of Indigenous data are the people from whom the data was gathered. Indigenous people have long held laws and protocols about data and record keeping, including traditional knowledge, names, accounts and histories, and must be able to actively participate in and drive the process that determines what data and information is collected, for what purpose and according to whose values, how it is shared, and who manages it. When these important questions are taken into consideration, and when Indigenous people have sovereignty over their data, the outcome can help lead to empowerment, self-determination, nation-building and true reconciliation.
Later this month, we will publish the second part of this article, which will look at some of the projects IRSI and others in BC are involved in now to continue to address the complex and challenging issue of data management.