In our introductory post to our Practicing Data Equity series, we mentioned that research institutions, especially research intensive or predominantly white institutions, often wield inequitable power in research partnerships with communities. Historically research projects across disciplines have also caused harm to communities by sharing data or findings inappropriately, fundamentally misrepresenting communities, or ignoring community agency and input. This applies as well to data or digital collections that may make data from such projects available to researchers and other data users. The CARE Principles provide a great framework for thinking through key considerations of data management and sharing with, specifically in the case of these principles, indigenous communities. We’ve included information below introducing the principles, but encourage everyone to read them fully on their website.
The CARE Principles for Indigenous Data Governance are a framework for research data management and sharing that is complementary to the FAIR Principles and was developed by the Global Indigenous Data Alliance (GIDA, learn more here: https://www.gida-global.org/purpose).
Per CARE Principles website,
“The current movement toward open data and open science does not fully engage with Indigenous Peoples rights and interests. Existing principles within the open data movement (e.g. FAIR: findable, accessible, interoperable, reusable) primarily focus on characteristics of data that will facilitate increased data sharing among entities while ignoring power differentials and historical contexts.
[…] The CARE Principles for Indigenous Data Governance are people and purpose-oriented, reflecting the crucial role of data in advancing Indigenous innovation and self-determination. These principles complement the existing FAIR principles encouraging open and other data movements to consider both people and purpose in their advocacy and pursuits.” (https://www.gida-global.org/care)
The acronym of CARE itself stands for 4 principles: Collective benefit, Authority to control, Responsibility, and Ethics. Each principle has 3 sub-principles that provide guidance on thinking through key concepts for data such as the purpose of the data and benefits to indigenous communities, access and rights, agency and roles as data stewards, responsibilities and accountability of those working with indigenous communities, a core set of ethics for centering indigenous communities, and much more.
These principles provide a critical framework for researchers, research support staff, and data users that work with indigenous communities or with indigenous data collections. However, we encourage everyone to read the principles fully, so they are more aware of the key concepts and values raised in them. We also encourage those who work with other communities to think about how they may use concepts in this framework to be a better researcher partner, to forefront community agency in research partnerships, and build more ethical research, data collections, and data systems.
CARE Principles of Indigenous Data Governance — Global Indigenous Data Alliance. 2021. Global Indigenous Data Alliance. https://www.gida-global.org/care.
To learn more, we encourage you to review the resources on the CARE Principles website.
- A NLM-NNLM recorded webinar on putting the CARE Principles into use and that they note may be specifically “of interest to those working with Indigenous data or collections”
- NLM-NNLM recorded 2018 webinar, From their description: “This webinar will review some of the modern scientific values in comparison to AIAN ways of knowing and provide examples of indigenous research concepts as they align with decolonizing data.”
See the NIH Tribal Consultation Report from their Draft Data Sharing Policy, https://osp.od.nih.gov/wp-content/uploads/Tribal_Report_Final_508.pdf