Who would have ever thought that “data governance” would become a trendy topic or a corporate priority? Some of us may remember the days when it was, at best, considered a necessary evil. Heightened by the use of analytics throughout the COVID-19 pandemic, the accuracy, timeliness, relevance, quality, privacy, trustworthiness and contextualization of data has become increasingly important. This is a welcome shift for many data practitioners.

Still today, relatively little is being explored regarding cultural safety and the important relationship between data and the people who share this information with us. This is critically important as it relates to First Nation, Inuit and Metis Peoples in Canada who not only have unique Worldviews about what data is and how it should be governed, but for whom a key social determinant of health and well-being is the ability to self-define and self-govern these activities. 

In 2007, the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) was adopted to advance the inherent rights of Indigenous Peoples globally, including as it relates to knowledge and data sovereignty. This document outlines key Principles that collectively define the basic standards for the dignity and well-being of Indigenous Peoples. Although Canada is a signatory, until these Principles are fully implemented domestically there will remain a lack of formal protection against various data collection challenges.

In Canada, most data are collected from First Nation, Inuit and Metis Peoples to support government planning and decision making, for instance through the federal census or health surveys, or to comply with funding agreements from federal and provincial governments. Furthermore, large amounts of data have been and continue to be collected by non-Indigenous researchers who have limited to no relationship with or understanding of the communities they are researching. Increasingly, data are being collected by First Nation, Inuit and Metis communities themselves, to support their own planning and decision making., Hhowever, there is relatively little acknowledgement about or respect for the expertise they carry when it comes to self-determined and self-governed data collection.

red, yellow and black arrows representing a cycle of data use across a study

Image: Example of Protocol for each major stage of the inquiry and learning cycle

Within First Nation, Inuit and Metis contexts, knowledge is generally believed to be learned or created in three ways: teachings passed down from Elders (Traditional Knowledge), dreams or visions (Revealed, Spiritual or Ancestral Knowledge) and through observation, experimentation and experience (Empirical Knowledge). First Nation, Inuit and Metis Peoples have always learned empirically through their deep relationship with the land, using a “plan-do-check-act” cycle that has been critical to their survival and evolution, for example always knowing where food, medicines and water are. Although there is no word for research within most, if not all, Indigenous languages, Indigenous Peoples have perfected forms of inquiry and learning that meet their needs and that are framed within their Worldviews and contexts.

Within these inquiry processes, data is broadly understood as any information that is shared between people for the purposes of learning. It includes the unique and shared Indigenous Knowledges that frame this information within a particular Worldview. Across First Nation, Inuit and Metis communities, there are many ways of understanding what Indigenous Knowledges are and how they are created, all of which are informed by an inseparable interconnection within local contexts. As such, with no universal definition, Indigenous Knowledges can only truly be understood at a local level through consideration of the intersectionality within, and between, the various dimensions of ourselves, the land we are on and the people we are with. Despite these differences, Indigenous Knowledges are almost always (if not entirely) moral in nature, meaning they share how to live a good life that respects our place in, and interconnectedness with, all of Creation.

To respect personal and collective rights to self-determination and self-governance, various Protocols have been developed by First Nation, Inuit and Metis communities to self-govern the collection and use of Indigenous Knowledges and data in Canada—for example the First Nations Principles of OCAP© (Ownership, Control, Access, Possession), the Six Principles of Ethical Metis Research or various guidelines developed by the Inuit Tapiriit Kanatami*. A shared common purpose of these Protocols is supporting knowledge and data sovereignty while using this information in a way that prioritizes the needs of, provides a relevant context to, maximizes benefit for and, most importantly, minimizes harm to Indigenous Peoples.

Unfortunately in Canada, centuries of colonial policies and practices have privileged dominant Eurocentric Worldviews while marginalizing Indigenous Worldviews, resulting in generations of imposed, invasive, oppressive and culturally unsafe data collection from (not with or by) First Nation, Inuit and Metis Peoples. This has led to large-scale appropriation and misuse of Indigenous Knowledges, data and intellectual property and perpetuation of false information. All of this has resulted in a widespread and pervasive mistrust by Indigenous peoples towards any form of data collection. This includes but is not limited to:

  • Appropriation: Indigenous Knowledges or data are published or used without the consent of, or credit to, the knowledge owners
  • Lack of transparency: Indigenous Knowledges or data are collected without approval or, if approved, are collected and used in ways that were not consented to or known about, including unethical research
  • Lack of reciprocity: data collection requirements are imposed and are often irrelevant to the community which does not support their own planning and decision making needs
  • Lack of stewardship: Indigenous Peoples do not have ownership of or access to the Knowledges and data they share with others
  • Aggregate data: Data that are collected from Indigenous communities are aggregated, making it impossible for them to distinguish and use their relevant information and presenting Indigenous Peoples as homogenous which informs and supports false representations of Indigenous Peoples
  • Legislation: Indigenous Knowledges and data collected by publicly-funded programs are the property of the funding government, which subjects it to privacy, access and archival legislation that can expose it to the public
  • Patriarchy: Patriarchal systems have replaced matriarchal systems, like Grandmother Councils, within many communities, and the traditional role of Indigenous women as Knowledge Keepers, Medicine Women, community leaders and decision makers has been threatened or lost entirely
A red semicircle with icons labeled: appropriation, lack of transparency, lack of reciprocity, lack of stewardship, aggregate data, legislation, patriarchy

Supporting First Nation, Inuit and Metis communities to solve complex health, social and economic challenges in their community, organizations and institutions must start by encompassing policies and process which are deeply rooted in First Nation, Inuit and Metis Values, Principles and ways of knowing and being so that they can then transform how to collect and use Indigenous Knowledges and data for meaningful impact.

Developing Indigenous Knowledges and data governance Protocols are a must to create a culturally safe framework for how to collect, use and share Indigenous Knowledges and data. In addition, such an initiative will allow for the collection of mutually beneficial data that prioritizes supporting Indigenous-led storytelling and community-level decision making. This revitalization of inquiry and learning processes that have been established and followed by Indigenous Peoples globally since time immemorial will continue to be critical in any efforts towards reconciliation, and to the reclamation of traditional economies and paths to scale.

*References:

FIRST NATIONS INFORMATION GOVERNANCE CENTRE (no date). The First Nations Principles of OCAP® [online]. Akwesasne: First Nations Information Governance Centre. Available from: https://fnigc.ca/ocap [Accessed: September 22, 2020].

INDIGENOUS INNOVATION INITIATIVE (2020). Indigenous Knowledges and Data Governance Protocol (unpublished). Toronto: Indigenous Innovation Initiative and Grand Challenges Canada.

NATIONAL ABORIGINAL HEALTH ORGANIZATION (2018). Principles of Ethical Métis Research [online]. Metis Centre at the National Aboriginal Health Organization. Available from: https://achh.ca/wp-content/uploads/2018/07/Guide_Ethics_NAHOMetisCentre.pdf [Accessed: September 22, 2020].