[Spotlight] CARE Principles
There are 370 million Indigenous Peoples worldwide across 70 countries and spreading over 5,000 different cultures. Considering this diversity, an official definition for “Indigenous” has not been recognised by any UN-body. Instead, a modern understanding of the right for self-identification and self-determination as distinctive peoples and communities has been recognised widely.
Therefore, “Indigenous Data Sovereignty” is presented as “the right of Indigenous Peoples and nations to govern the collection, ownership and application of their own data”. Indigenous data include information, knowledge, and data about their peoples, resources and environments, and collective cultural knowledge and belongings.
In our last Implementation Working Group spotlight session, we were privileged to have Stephanie Russo Carroll and Maui Hudson sharing with us the Global Indigenous Data Alliance (GIDA) and their CARE Principles for Indigenous Data Governance, recently launched on their website. The formation of GIDA and the CARE principles is an initiative to both raise awareness of, and assert the rights of Indigenous Peoples and nations to govern themselves and the data about them.
CARE stands for Collective benefit, Authority to control, Responsibility and Ethics.
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
- For improved governance and citizen engagement
- For equitable outcomes
Authority to control: Indigenous Peoples’ rights and interests in Indigenous data must be recognized and their authority to control such data respected.
- Recognizing rights and interests
- Data for governance
- Governance of data
Responsibility: There is the responsibility to be accountable on how data is being used. Accountability requires meaningful and openly available evidence of these efforts and the benefits accruing to Indigenous Peoples.
- For positive relationships
- For expanding capability and capacity
- For Indigenous languages and worldviews
Ethics: Indigenous Peoples’ rights and wellbeing should be the primary concern at all stages of the data life cycle and across the data ecosystem.
- For minimizing harm and maximizing benefit
- For justice
- For future use.
These points largely speak for themselves, but you can read in more depth on their website.
They have cleverly coined the catchy phrase “Be FAIR and CARE”: Findable, Accessible, Interoperable and Reusable — the well-known FAIR data principles — combine well with CARE. Maui and Stephanie shared a very helpful slide that maps FAIR and CARE to the Open Data Charter principles. The FAIR principles align very well with the Charter principles 2 to 4 — “timely and comprehensive”; “accessible and usable”; and “comparable and interoperable”.
The first CARE principle, “collective benefit”, aligns well with Charter principles 5 and 6 — “for improved governance and citizen engagement”; and “for inclusive development and innovation”.
However, the CARE principles of “authority to control”, “responsibility” and “ethics” are not covered by the Charter principles, and the Charter principle of “Open by Default” would seem to create a tension with the CARE principles, especially authority, ownership and control.
It would be fair to say that even amongst the global open data community ‘open by default’ creates some tension. During the review of the Charter Principles during 2018, ‘open by default’ was the most hotly debated principle. Some see it as foundational to open data, while others find it difficult to operationalise. The review of the principles highlighted the need to clarify exactly what open by default means. Shedding ‘open by default’ in the light of the CARE principles is an opportunity to hone our understanding.
Open by default does not mean that as data is gathered it should be made “automatically” available to anyone, for any purpose . On the contrary, “by default” requires starting with a mindset that intentionally seeks to build in trustworthy, fair and accountable data practices, both in the governance process, and as a result, the quality of the datasets that are made available.
This means you should set about considering ways to enhance protections where needed, give voice and agency to people that may be affected by its use, and mitigate risks that can cause harm, before releasing the data. Thanks to GIDA, the CARE principles offer ways to consider whether Indigenous Peoples will be impacted by the release of a dataset.
Beyond data release
The CARE principles go beyond just the release of data. To realise benefits and innovation, and ensure equitable outcomes for Indigenous Peoples, they require involvement in the whole life cycle from co-designing the data collection, to governance over the storage and management and eventual release and reuse of the data.
This is important for government agencies to bear in mind. Not only do they need to be mindful of data (and the potential for open data) when they design new services, but they also need to engage and work with Indigenous Peoples to ensure the service best meets their needs, and the right data is collected along the way to give them knowledge of whether the service is meeting their needs from their perspective.
Health and research environments
To ensure governance of Indigenous data in health and research environments, GIDA advocates for mechanisms that facilitate Indigeous data governance. For example better publication practices and metadata tagging. Provenance and disclosure statements detail the origin of data, collective consent and data availability. The implementation of TK and Biocultural labels are a way to raise awareness of the cultural significance in data (and other content) and express restrictions and expectations around the access and use of the data by non-community users.
There is more to discuss and learn about how Open Data and Indigenous Data Sovereignty intersect. The intent behind both sets of principles is to be inclusive and reach the best possible outcomes for people through data. So long as we continue to engage in conversation with open minds, we can work to clarify our understanding and continue to learn and grow on a journey together. The CARE principles certainly prompt us all to consider the people reflected in data and how our actions with it may impact on them.