The ‘CARE Principles for Indigenous Data Governance’ relate to any Indigenous data, knowledge, or information that affect Indigenous Peoples, nation, and communities as a whole or individually (Carroll et al., 2021). The CARE Principle is a framework based on the right of Indigenous Peoples and nations to govern the collection, ownership, and application of their own data. CARE stands for: Collective benefit, Authority to control, Responsibility, and Ethics. The defintions below are from quoted from the Research Data Alliance International Indigenous Data Sovereignty Interest Group, (September 2019), “CARE Principles for Indigenous Data Governance,” The Global Indigenous Data Alliance, GIDA-global.org.
Collective Benefit - Data ecosystems shall be designed and function in ways that enable Indigenous Peoples to derive benefit from the data for inclusive development and innovation, improved governance and citizen engagement, and equitable outcomes.
Authority to Control - Indigenous Peoples’ rights, interests, and authority in Indigenous Data must be recognized and empowered, enabling Indigenous Peoples and governing bodies to determine how Indigenous Peoples are represented and identified within data, in accordance with cultural governance protocols. This also includes Indigenous lands, territories, resources, knowledges and geographical indicators.
Responsibility - Indigenous Data must be connected to relationships built on respect, reciprocity, trust, and mutual understanding, as defined by the Indigenous Peoples to whom those data relate. Information must be shared about how data are used to support Indigenous Peoples’ self-determination and collective benefit through openly available, meaningful evidence. This includes enhancing data literacy and supporting the development of an Indigneous digital infrastructure, able to generate data grounded in the languages, worldviews, and lived experiences of Indigenous Peoples.
Ethics - Indigenous Peoples’ rights and wellbeing should be the primary concern at all stages of the data life cycle and across the data ecosystem. Representation and justice, as well as consideration of potential future use (or harm) should be incorporated. This includes acknowledging the provenance and limitations or obligations for secondary use, especially in issues of consent. https://www.lib.sfu.ca/help/publish/scholarly-publishing/radical-access/fair-and-care-data
These principles were designed in 2019 to complement the FAIR principles as FAIR alone does not take into account the rights and interests of Indigenous peoples (DataStream, 2021). FAIR principles are guidelines for data while CARE principles are more focused on people and the purpose of the research (DataStream, 2021).
The following is quoted from First Nations Information Governance Centre (2014) "Ownership, Control, Access and Possession (OCAP™): The Path to First Nations Information Governance" pg. 4-5.
Ownership - The notion of ownership refers to the relationship of a First Nations community to its cultural knowledge/ data/ information. The principle states that a community or group owns information collectively in the same way that an individual owns their personal information. Ownership is distinct from stewardship. The stewardship or custodianship of data or information by an institution that is accountable to the group is a mechanism through which ownership may be maintained.
Control - The aspirations and inherent rights of First Nations to maintain and regain control of all aspects of their lives and institutions extend to information and data. The principle of ‘control’ asserts that First Nations people, their communities and representative bodies must control how information about them is collected, used and disclosed. The element of control extends to all aspects of information management, from collection of data to the use, disclosure and ultimate destruction of data.
Access - First Nations must have access to information and data about themselves and their communities, regardless of where it is held. The principle also refers to the right of First Nations communities and organizations to manage and make decisions regarding who can access their collective information.
Possession - While ‘ownership’ identifies the relationship between a people and their data, possession reflects the state of stewardship of data. First Nation possession puts data within First Nation jurisdiction and therefore, within First Nation control. Possession is the mechanism to assert and protect ownership and control. First Nations generally exercise little or no control over data that is in the possession of others, particularly other governments.