Tribal data sovereignty: Whakatōhea rights and interests

Data as a Strategic Resource: Self-determination, Governance, and the Data Challenge for Indigenous Nations in the United States

“…Māori in Aotearoa (New Zealand) launched a national effort to assert sovereignty over information about Māori via the Te Mana Raraunga-Māori Data Sovereignty Network (Te Mana Raraunga, 2016). In addition, iwis (tribes) themselves have exerted control over the data about their peoples, environments, and businesses (Hudson, Farrar, & McLean, 2016). Indigenous nations in the United States have voiced the need for similar tribal control of data (National Congress of American Indians, 2016;Red Star Innovations, 2015).…”

‘As Long as It's Used for Beneficial Things’: An Investigation of non-Māori, Māori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI)

“…While none of our sample mentioned this issue, we acknowledge concerns about the negative implications of culturally decontextualized data interpretation and the Māori perception of data as a taonga (treasure) (Hudson et al, 2017; Kukutai & Taylor, 2016; Walter & Suina, 2019). As such, we tautoko (support) the concept that the Māori data should be subject to Māori governance, that Māori should be able to access Māori data to support their development aspirations (Hudson et al, 2016) and that ‘collective benefit, authority to control, responsibility & ethics’ (CARE) principles (Kukutai et al, 2020) should be adopted when using IDI data. Additionally, as we did not explore other socio-demographic characteristics (e.g.…”

Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities

“…Similarly, questions about ownership, control, access, and possession (OCAP) created by First Nation communities in Canada are informing emerging debates on indigenous data sovereignty and the rights of tribal nations to determine how and for what the common genomic data of their members can be used. 38,39 OCAP principles are an expression of First Nations jurisdiction over information about their communities and its community members. Data sharing has become a fundamental component of biorepository research; it will be important to develop novel ways to balance patient privacy with public utility and indigenous rights in different countries.…”