Gymnastik- och idrottshögskolan, GIH

My contribution discusses epidemiological knowledge-making from the postwar period until today, with a focus on classifications and categories. Today, epidemiology is a word on everyone’s lips. Epidemiological knowledge is habitually used as a basis for decision-making on the highest political level; data created with epidemiological methods are seen as representing truths about reality that are useful in public health policies. Nonetheless, epidemiology is constituted by scientific practices shaped in specific social and cultural contexts, behind which lie complex processes and assumptions about causation and risk (Trostle 2005). This becomes particularly visible when scrutinizing the categories employed in epidemiological research. 

Since the 1990s, identity categories such as gender, race/ethnicity, and class are used extensively to examine and explain patterns of health and disease in populations. However, historical, and localised perspectives reveal that constructions and uses of categories have varied considerably over time and place (Bredström & Mulinari 2024, 2023, 2022, Bauer 2013, 2019, Epstein 2007). This is partly an effect of the varying availability of data. In Sweden, health and population registers – some of which go back to the eighteenth century – are routinely used as sources of data. Registers are a prominent and distinctive feature of the Scandinavian research environment and they have crucially influenced epidemiological studies (Bauer 2014). 

 After the 1945 census, the ethnicity of population groups ceased to be recorded in Swedish national statistics. In the absence of ethnic markers in registers, epidemiologists have had to employ alternative concepts, strategies, and techniques to study minority health. The purpose of the paper is to explore the classifications and population categories that epidemiologists in a Swedish context have employed instead of ethnicity.

 The studied period, 1950-2020, is marked by some key changes that both carry explanatory potential and serve as a backdrop. Since the post-war years, epidemiological focus has shifted recurrently while, at the same time, information technology in biomedicine has become ubiquitous. In Sweden, ambitious programs in the fields of public health, education, and housing have been launched, criticized and subsequently partially dismantled. The Swedish population has diversified due to labour and, later, refugee immigration. All the while, the health gap between the majority population and minorities has increased. The paper will relate the epidemiological knowledge production regarding minority health to these societal and demographic changes. 

Big data are today central for practices in disparate arenas such as science, public policy, administration, and business.Big health data are used to evaluate and plan public health policies as well as primary health care, and thus affect how people live their lives. Health and population registers – some of which go back to the eighteenth century in Sweden – are routinely used as sources of data. The availability of comprehensive – digitized – population records and the possibility of linking these to individuals and health data collections has laid the foundation for a virtual scientific success story where Sweden and the Nordic countries stand out as world-leading. Swedish and Nordic big health data appear as natural resources, ready to be mined. This development took off in the 1990s but has a longer history. The purpose of this paper is to examine historically the emergence, evolution and contents of the Swedish system of big health data. Firstly, I will map the registers that form part of the system and, secondly, discuss when, how, and involving which actors, they transformed from mainly being used as administrative tools to becoming irreplaceable, competitive instruments of global and national public health (and economic) value.

When societies experience health crises today, eyes often turn to epidemiology for explanations. Epidemiological knowledge is used as a basis for decision-making; data created with epidemiological methods are seen as representing truths about reality that are usefulin public health policies. Nonetheless, epidemiology is constituted by scientific practices shaped in specific social and cultural contexts, behind which lie complex processes andassumptions about causation and risk. This becomes particularly visible when scrutinizingthe categories employed in epidemiological research. Since the 1990s, categories of gender, class, and race/ethnicity are used extensively to examine and explain patterns of healthand disease in populations. On the one hand, such categories may be helpful in identifying inequities in health. On the other hand, as history shows in the case of race/ethnicity, they offer alarming possibilities of misuse.The 1945 census was the last to record ethnicity in Sweden, and the 1973 Law on datasecurity made ethnic registering virtually illegal. Swedish population statistics and official health and social registers, comprehensive as they might otherwise be, therefore do not contain information on the ethnic background of the people registered. Still, numerous reports indicate health gaps between majority populations and underprivileged minorities defined in ethnic or racial terms – in itself a crisis of society and modern medicine. This paper explores the epidemiological practices, classifications, and categorisations that examine and purport to explain these gaps in Sweden, a country where ethnic identities are neither counted nor registered. 

The 1945 census was the last to record ethnicity in Sweden, and in 1973, registering ethnicity became virtually illegal. Swedish population statistics and official health and social registers therefore do not contain information on the ethnic background of the people registered. Exploring socio-medical and epidemiological research in Sweden from the 1940s to the 1980s, the chapter discusses the tension between ethical and legal constraints on the one hand, and the scientific, administrative, and political need for accurate information on minority and ethnic groups on the other. Three alternative research strategies to substitute for the lack of data on ethnicity are identified: using alternative but related categories such as nationality, country of birth, or immigrant status; “reading ethnicity” from pre-existing data collections; and conducting time-consuming and costly special studies designed to enable researchers to bypass the proscription of ethnic registration. These strategies have produced new epidemiological and socio-medical understandings concerning ethnicity and health/disease. However, as certain groups and categories have been statistically more available or visible in society than others, an uneven body of knowledge has evolved. In effect, some minorities have been spotlighted while others have remained hidden in plain sight.