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Context: Open science is gaining ground and aims to build trust and transparency in research through the FAIR principles (Fairness, Accessibility, Interoperability, and Reusability of data). The GIDA-Sápmi network advocates for an ethical and responsible use/reuse of research data and promotes the operationalisation of the CARE principles (Collective Benefit, Authority to Control, Responsibility, and Ethics) to Sámi research data.

Rationale: Research data are attached to a context and people, and the open data practice needs to address the social dimensions of data, which the FAIR principles overlook, and the CARE principles address. The first cross-national Sámi Science Week (2025) hosted two panels, where Sámi research data governance was addressed. This commentary summarises the panels, that is, the concerns raised with open data and solutions for how to apply this for Sápmi.

Findings: Key themes that emerged from the panels were the need for Sámi-specific governance principles, the development of Sámi-specific governance protocols, and the use of Sámi AI to support language revitalisation and culturally sensitive healthcare tools. However, concerns were raised about the risks of data misuse when data is outside Sámi control and management—in particular, in the recent data-driven technological advancements. The panels concluded that Sámi data governance is essential for ethical and responsible research practice, but this requires clear governance protocols that respect Sámi interests and Sámi epistemologies. Whilst challenges remain, the panel calls for the development of practical solutions for Sámi data governance, contributing to responsible and ethical use and reuse of data.

Objectives: Despite increasing research interest in the health and well-being of the Indigenous Sámi people, knowledge remains fragmented and insufficient. The HALDI study aims to examine health status, well-being, and associated determinants within a multi-ethnic context, focusing on the Sámi people in Sweden. This protocol outlines the study’s objectives, design, and methodology, with the goal of generating representative data to inform future research, policy, and interventions targeting Sámi health.

Design: To ensure relevance, initial focus groups discussions identified key health issues for the Sámi people in Swedish Sápmi. Based on these findings, a comprehensive questionnaire was developed, encompassing socioeconomic status, ethnicity, psychiatric and somatic disorders, and self-perceived health. All adults in Jokkmokk municipality (n = 4077) were invited to participate. The following year, a clinical examination was conducted, including measures such as blood pressure, pulse, height, weight, blood sampling, and an updatet questionnaire on health status, dietary habits, and, for those aged 65 years and above, assessments of frailty and cognition. A total of 1682 individuals (41%) responded to the first questionnaire; 68% identified as Swedish, 22% as Sámi, and 7% with other ethnic identities. In the clinical study, 706 participated with similar ethnic proportions.

Conclusion: This is the first study in Sweden to incorporate ethnic self-identification in a multi-ethnic population. By presenting the study protocol and sample characteristics, we highlight the potential for future analyses to inform evidence-based health interventions and policy to improve outcomes for the multi-ethnic Arctic population.

Objectives: Racism and ethnic discrimination are global health issues, but the extent and effects on Indigenous Peoples in the Arctic region are still poorly understood. By investigating the methods, data sources, and definitions used in articles examining racism and ethnic discrimination among Indigenous peoples in the Arctic between 2008 and 2021 this review aims to create a solid foundation for future research.

Design: We conducted a search across multiple databases, including PubMed, PsycInfo, Web of Science, Scopus, and the Cochrane Review. Our search criteria included: Indigenous groups, racism or ethnic discrimination, and Arctic regions. After removing off-topic articles, two researchers reviewed the remaining articles against predefined eligibility criteria.

Results: The research field is expanding, but a significant portion of Arctic Indigenous peoples remains underrepresented. Predominant research methods include questionnaires, interviews, and case studies, often derived from large cross-sectional studies. Self-reported responses to questions about ethnic discrimination and racism are the primary research method, while some articles involve researchers subjectively evaluating data to determine what qualifies as racism or ethnic discrimination. Reaching a consensus on the definitions of ethnic discrimination and racism is challenging, with definitions ranging from negative, unfair, or differential treatment to broader, structural perspectives. Approximately half of the articles lack clear definitions.

Conclusion: There is a notable difference in terminology, where racism as a term is more used in Canada/US while, ethnic discrimination is more predominant in the Nordic countries. Despite these differences, the scales used to measure racism or ethnic discrimination show significant similarities. A large part of the investigated articles emphasize interpersonal discrimination. An emerging perspective after 2016 views racism/ethnic discrimination as something that produces inequalities between racial or ethnic groups and upholds or creates systems of privilege and oppression. Research consistently highlights the importance of considering local contexts of racism, ethnic discrimination and oppression.

The prevalence of interpersonal violence has been reported at higher levels among Indigenous than non-Indigenous populations worldwide, but has not been thoroughly investigated among the Sámi population in Sweden. The aims of this study were to investigate: (1) the prevalence of emotional, physical, and sexual violence and violence by intimate partners, family members, acquaintances, and strangers among participants identifying as Sámi or Swedish, (2) whether reporting experiences of historical losses and discrimination mediated the anticipated association between identifying as Sámi and reporting experiences of violence, and (3) whether background characteristics were associated with reporting experiences of violence. Cross-sectional questionnaire data collected in 2021 for the “Health and Living conditions in Sápmi” study were used. All adults in an arctic region in Sweden were invited to participate (response rate: 41%). Respondents self-identifying as Sámi (n = 375; 24.7%) or Swedish (n = 1,144; 75.3%) were included in this study. Sámi respondents of both sexes more often reported violence by an acquaintance or stranger. Likewise, more Sámi than Swedish women reported family violence (16.4% vs. 9.2%), but there was no difference concerning intimate partner violence (13.3% vs. 15.4%). Mediation analyses revealed strong positive indirect effects of historical losses and discrimination on the different types of violence. Being female was the strongest predictor of reporting intimate partner violence, and younger age was associated with violence by all perpetrators except family members. In conclusion, interpersonal violence was more often reported by Sámi respondents, but the association was explained in full by experiences of historical losses and discrimination. The results underline the importance of a life-course and even intergenerational and historical perspectives when investigating interpersonal violence.

The Eight Ds model (Carson and Carson 2014) explains the unique characteristics of human and economic geography for sparsely populated areas (SPAs) as disconnected, discontinuous, diverse, detailed, dynamic, distant, dependent and delicate. According to the model, SPAs are subject to dramatic changes in demographic characteristics that result from both identifiable black swan events and less apparent tipping points in longer-term processes of demographic change (Carson et al. 2011). The conceptual foundations for this assertion are clear. Populations in SPAs can experience large and long-term impacts on the overall demographic structureas a result of decisions by a relatively small number of people. High levels of migration and mobility cause constant shifts in the demographic profile and prime SPAs to adapt to many different demographic states (Carson and Carson 2014). The Northern Territory of Australia, for example, experienced previously unseen waves of pre-retirement aged migrants in the past decade or so (Martel et al. 2013) as evidence of detailed but important changes to past trends. However, while dramatic demographic changes are conceptually possible and occasionally observable, there have been few attempts to examine the conditions under which such changes are likely to occur or not to occur. This is an important question particularly in relation to black swan events such as natural disasters because effective disaster management policy and planning is at least partially dependent on understanding who is affected and in what ways (Bird et al. 2013). 

The purpose of this chapter, therefore, is to begin the process of identifying the conditions under which dramatic demographic responses to natural disasters in SPAs might occur. In the process, we introduce two new 'Ds' with which to describe the nature of demographic change. We propose that natural disasters such as cyclones, floods, earthquakes, bushfires, landslides, avalanches and crop failures present the potential to disrupt or to divert demographic development.

En sammanfattning av rapporten finns på svenska, nord- och lulesamiska. En sydsamisk översättning utgår på grund av återbud med kort varsel där ingen ersättare kunnat hittas inom tidsfristen. 

Syfte: Fokusgruppstudiens syfte var att möjliggöra för samer att delta i öppna samtal om hälsotillstånd och hur levnadsvillkor och livsstil kan påverka hälsan och att låta denna kunskap berika utformningen av en enkät och en klinisk studie om hälsotillstånd som nästa steg av HALDI-studien.

Metod: Elva fokusgrupper med samiska deltagare geografiskt fördelade från södra delarna till norra delarna av Sápmi genomfördes under hösten 2018-våren 2019. Deltagarnas ålder sträcker sig från 23-77 år, med en medelålder på 53 år. Två över-gripande frågeområden avhandlades vid fokusgruppdiskussionerna; samisk hälsa och hälsoforskning med fokus på samernas hälsa. Samtalen ljudinspelades och transkriberades till text. Texterna analyserades av tre oberoende forskare med hjälp av kvalitativ innehållsanalys.

Resultat: Deltagarna beskriver en holistisk syn på hälsa, det vill säga att allt hänger samman. De lägger stor vikt vid upplevelser/tillstånd av andlighet, vistelsei naturen, fysisk aktivitet och harmoni för att uppnå en god hälsa. Andligheten kopplas inte samman med religion utan förknippas starkt med naturen. Det framkom att en kulturell norm ”ieš birget” kan påverka benägenheten att söka vård. Denna norm innebär en strävan efter att klara sig själv, att vara stark, inte visa sig svag och att inte belasta andra med problem. I fokusgruppdiskussionerna framkom även att det både är svårt och ovanligt att öppet prata om psykisk ohälsa och missbruksproblematik. Detta kan på sikt påverka hälsan och benägenhet att söka vård negativt. Deltagarna har negativa erfarenheter av bristfällig kulturförståelse och okunskap om samiska livsvillkor i mötet med hälso- och sjukvården. Utsatthet i form av diskriminering, rasism och okunskap om samisk historia och samiska livsvillkor framkommer som vanligt förekommande och beskrevs vara en risk för ohälsa och ansågs ha en negativ inverkan på hälsotillståndet. Det uttrycktes skepsis och misstroende mot forskning generellt. Detta grundades på upplevelse av brist på delaktighet, bristfällig information och utebliven återkoppling av resultat men även på historiska erfarenheter kopplade till bland annat rasbiologi. Samtidigt påtalades att ökad kunskap avseende samernas hälsa behövs och därför ansåg deltagarna att det ändå var viktigt att delta i forskningsstudier. Vikten av att tydliggöra forskningens syfte och dess nytta betonades särskilt.

Slutsatser: Fokusgruppstudien har gett värdefulla bidrag om viktiga forskningsområden och hur kommande hälsostudier som involverar samisk befolkning bör utformas och genomföras. Det går att konstatera att inom samisk hälsoforskning i Sverige finns många områden som går att förbättra och tydlig-göra exempelvis kring etik, information, återkoppling, datahantering och utformning av studier 

Forskningen rörande samisk hälsa har de senaste två decennierna ökat avsevärt och bit för bit börjat förbättra ett fragmentariskt kunskapsläge. Det kan också sägas om det internationella forskningsområdet urfolkshälsa (Indigenous Health), där samisk hälsoforskning ofta hämtar jämförelser och inspiration. Vi önskar med detta temanummer väcka intresse för den samiska befolkningens hälsa och sätta ljus på den pågående samiska hälsoforskningen. Temanummret innehåller sammanlagt fem peer-review granskade originalartiklar, två översiktsartiklar och tre recensioner. Välkomna till det första temanumret om samisk hälsoforskning!