The governance of the SAMINOR Study and integration of the CARE principles

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ABSTRACT The SAMINOR Study represents a unique data collection on health and diseases among the multiethnic population – including the Sámi population in Norway – making it a case study for discussing Sámi research data governance in a health context. This article describes how Sámi interests and needs in the SAMINOR Study are governed by two steps of a research application review process consisting of the SAMINOR project board and the Sámi Expert Ethical Committee for Sámi Health Research. We explore how these two steps align with the CARE principles for Collective Benefit, Authority to Control, Responsibility, and Ethics, which are global principles for Indigenous data governance and promote Indigenous data sovereignty. The CARE principles stress the importance of Indigenous self-determination and control, tangible benefits, ethical use, and the promotion of Indigenous values and equity. We found compliance between most of the main and sub- principles but observed the need to address reuse and data sharing more explicitly. The CARE principles do not consider ownership of research data, which for the SAMINOR study is outside of Sámi people's control, hence we question whether Indigenous data sovereignty is achieved for the SAMINOR data.