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

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.

SAMINOR iskkus ovddasta earenoamáš diehtočoakkáldaga Norgga sápmelaččaid dearvvašvuođa ja eallindábiid birra, ja heive ovdamearkan go ságastallat sámiid dutkandieđuid stivrema birra, dearvvašvuođa oktavuođas. Dát artihkal govvida movt sámiid beroštumit ja dárbbut SAMINOR iskosis hálddašuvvot guovtti oasis dutkanohcamušaid dárkkistanproseassas, namalassii SAMINOR prošeaktalávdegoddi bokte ja Sámi ehtalaš áššedovdikomitea bokte. Mii guorahallat movt dát guokte oasi gurret CARE:a vuođđoprinsihpaid kollektiiva ovdamuni, ráđđenválddii, ovddasvástádusa ja etihka ektui, mat leat globála prinsihpat álgoálbmoga dieđuid stivremis. SAMINOR iskkus lea fuopmášahtti diehtogáldu sápmelaččaid dearvvašvuođa birra ja dat lea ovdamearkan das movt CARE:a prinsihpaid lea vejolaš heivehit ja láktit sámi dearvvašduođadutkamii. CARE prinsihpat deattuhit álgoálbmoga iešmearridan – ja ráđđenválddii, konkrehtalaš ovdamuniid, ehtalaš geavaheami ja álgoálbmoga árvvuid ja ovttaárvosašvuođa. SAMINOR iskkus čájeha ahte dat guovtti oasát dutkanohcamušaid dárkkistanproseassa ja CARE prinsihpat láktasit bures oktii, earret go lea sáhka dáhtaid nuppes geavaheami birra, dáhtaid juohkima ja dáhtaid oamasteami birra Go sámit kollektivvalaččat eai oamas SAMINOR dáhtaid, de ferte gažadit leatgo oláhan dáhtaid sorjjasmeahttunvuođa.