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Health policy and academic discourses on rare diseases and people with rare conditions frequently employ terms such as 'low prevalence' and 'unique' to characterize the smallness of the population under consideration and to justify targeted action toward these patient groups. This paper draws from recent anthropological scholarship on smallness and data, ethnographic research in Finland and Poland, as well as document and media analysis to examine how data is utilized in the context of isolated populations that are considered sites of rare diseases in these two countries. Specifically, this paper juxtaposes the notion of Finnish Disease Heritage (FDH) with that of a 'Kashubian gene' in Poland. The concept of FDH was developed by Finnish researchers in the 1970s; it encompasses almost forty rare hereditary diseases that are significantly more prevalent in Finland than elsewhere globally. On the other hand, the notion of the 'Kashubian gene' was first utilized by the media and some members of the Polish medical community around 2008. Based on 'unstable' data gathered during genetic research, the term referred to the high prevalence of a rare metabolic disorder (Long-Chain 3-Hydroxyacyl-CoA Dehydrogenase (LCHAD) deficiency) among Kashubians, an ethnic minority that resides in Northern Poland's Pomerania region. Whereas FDH facilitated the production and branding of 'a unique Finnish genetic identity' (Tupasela 2016b, 61), the notion of the 'Kashubian gene' has engendered health policy interventions targeting members of this ethnic minority and has contributed to stigmatizing practices carried out against Kashubians. [ABSTRACT FROM AUTHOR]

Aims: Future research on health inequality relies on data that cover life-course exposure, different birth cohorts and variation in policy contexts. Nordic register data have long been celebrated as a 'gold mine' for research, and fulfil many of these criteria. However, access to and use of such data are hampered by a number of hurdles and bottlenecks. We present and discuss the experiences of an ongoing Nordic consortium from the process of acquiring register data on socio-economic conditions and health in Denmark, Finland, Norway and Sweden. Methods : We compare experiences of data-acquisition processes from a researcher's perspective in the four countries and discuss the comparability of register data and the modes of collaboration available to researchers, given the prevailing ethical and legal restrictions. Results : The application processes we experienced were time-consuming, and decision structures were often fragmented. We found substantial variation between the countries in terms of processing times, costs and the administrative burden of the researcher. Concerned agencies differed in policy and practice which influenced both how and when data were delivered. These discrepancies present a challenge to comparative research. Conclusions : We conclude that there are few signs of harmonisation, as called for by previous policy documents and research papers. Ethical vetting needs to be centralised both within and between countries in order to improve data access. Institutional factors that seem to facilitate access to register data at the national level include single storage environments for health and social data, simplified ethical vetting and user guidance. [ABSTRACT FROM AUTHOR]