ABSTRACT

Indigenous Data Sovereignty is increasingly discussed in CANZUS countries but not as much in the Nordic countries, mostly due to Nordic prohibitions of the collection of ethnicity data. This chapter reports the first study on how the Sami people in Sweden perceive Indigenous control and ownership of Sami health research data. Results show that data and data management are important with preference for Sami authorities, preferably the Sami Parliament to take responsibility of data. However, doubts were expressed on the capacity of the Sami Parliament to undertake a data repository role. The study also shows that the legacy of the Nazi regime, of racial biology and of colonization is still present in discussions on Indigenous data and adds to the lack of trust between the Sami and the Swedish nation state.