Skip to main content
×
×
Home

From Administrative Infrastructure to Biomedical Resource: Danish Population Registries, the “Scandinavian Laboratory,” and the “Epidemiologist's Dream”

  • Susanne Bauer (a1)
Argument

Since the 1970s, Danish population registries were increasingly used for research purposes, in particular in the health sciences. Linked with a large number of disease registries, these data infrastructures became laboratories for the development of both information technology and epidemiological studies. Denmark's system of population registries had been centralized in 1924 and was further automated in the 1960s, with individual identification numbers (CPR-numbers) introduced in 1968. The ubiquitous presence of CPR-numbers in administrative routines and everyday lives created a continually growing data archive of the entire population. The resulting national-level database made possible unprecedented record linkage, a feature epidemiologists and biomedical scientists used as a resource for population health research. The specific assemblages that emerged with their practices of data mining were constitutive of registry-based epidemiology as a style of thought and of a distinct relationship between science, citizens, and the state that emerged as “Scandinavian.”

Copyright
References
Hide All
Althusser, Louis. 1971. Lenin and Philosophy and Other Essays. New York and London: New Left Review.
Aly, Götz, and Roth, Karl Heinz. 2000. Die restlose Erfassung. Volkszählen, Identifizieren, Aussondern im Nationalsozialismus. Frankfurt am Main: Fischer.
Amin, Ash, and Thomas, Damian. 1996. “The Negotiated Economy: State and Civic Institutions in Denmark.” Economy and Society 25:255281.
Andersen, T. F., Madsen, M., Jorgensen, J., Mellemkjaer, L, and Olsen, J. H.. 1999. “The Danish National Hospital Register: A Valuable Source of Data for Modern Health Sciences.” Danish Medical Bulletin 46 (3):263268.
Appadurai, Arjun. 1990. “Disjuncture and Difference in the Global Cultural Economy.” Theory, Culture & Society 7:295310.
Armstrong, David. 1995. “The Rise of Surveillance Medicine.” Sociology of Health & Illness 17:393404.
Aronowitz, Robert. 1998. Making Sense of Illness: Science, Society and Disease. Cambridge: Cambridge University Press.
Asdal, Kristin. 2011. “The Office: The Weakness of Numbers and the Production of Non-Authority.” Accounting, Organizations and Society 36:19.
Bauer, Susanne. 2008a. “Curating and Dis/Playing the Biopolitics of Prevention. A Risk Assessment Software as a Museum Object?NordNytt. Nordisk Tidskrift for Etnologi og Folkloristik 105:7185.
Bauer, Susanne. 2008b. “Mining Data, Gathering Variables and Recombining Information: The Flexible Architecture of Epidemiological Studies.” Studies in History and Philosophy of Biological and Biomedical Sciences 39:415426.
Bauer, Susanne. 2013. “Modeling Population Health: Reflections on the Performativity of Epidemiological Practice.” Medical Anthropology Quarterly 27(4):510530.
Beck, Ulrich, Giddens, Anthony, and Lash, Scott. 1996. Reflexive Modernisierung: Eine Kontroverse. Frankfurt am Main: Suhrkamp.
Berlivet, Luc. 2005. “Exigence scientifique et isolement institutionnel: L’essor contrarié de l’épidemiologie française dans la seconde moitié du XXe siècle. ” In Body Counts: Medical Quantification in Historical & Sociological Perspectives, edited by Jorland, Gérard, Opinel, Annick, and Weisz, George, 335358. Montreal: McGill-Queen's University Press.
Bowker, Geoffrey C., and Star, Susan Leigh. 1999. Sorting Things Out: Classification and Its Consequences. Cambridge MA: MIT Press.
Breslow, Norman E., and Day, Nicholas E.. 1980. Statistical Methods in Cancer Research, vol. I: The Analysis of Case-Control Studies. Lyon: IARC.
Breslow, Norman E., and Day, Nicholas E.. 1987. Statistical Methods in Cancer Research, vol. II: The Design and Analysis of Cohort Studies. Lyon: IARC.
Callon, Michel, and Muniesa, Fabian. 2005. “Peripheral Vision: Economic Markets as Calculative Collective Devices.” Organization Studies 26:12291250.
Calltorp, Johan. 1996. “Det nordiska laboratoriet en guldgruva för hälso-och sjukvårdsforskning” [The Nordic Laboratory: A Gold Mine for Health Services Research]. Nordisk medicin 111:1315.
Campbell, John L., and Pedersen, Ove K.. 2007. “The Varieties of Capitalism and Hybrid Success: Denmark in the Global Economy.” Comparative Political Studies 40:307332.
Canguilhem, Georges. 1978. The Normal and the Pathological, trans. by Fawcett, Carolyn R. and Cohen, Robert S.. New York: Zone Books.
Chevion, Dov. 1967. “The Problem of Integration of Automated Information Systems.” In International Symposium on Automation of Population Register Systems: Proceedings. Jerusalem, Israel, 25–28th September 1967, edited by Kasher, Asa, 533538. Jerusalem: Information Processing Association of Israel.
Clemmesen, Johannes. 1948. “The Danish Cancer Registry: Problems and Results.” Acta pathologica et microbiologica Scandinavica 25:2633.
Clemmesen, Johannes. 1986. En kræftforskers oplevelser 1908–1948 [A Cancer Researcher's Experiences, 1908–1948]. Copenhagen: Attika.
Clemmesen, Johannes. 1988. En kræftforskers oplevelser 1948–1988 [A Cancer Researcher's Experiences, 1948–1988]. Copenhagen: Attika.
Coleman, Daniel. 1994. “Gold Mine of Psychiatric Data Discovered in Danish Registry.” New York Times, 31 August, http://www.nytimes.com/1994/08/31/us/gold-mine-of-psychiatric-data-discovered-in-danish-registry.html (last accessed December 27, 2013).
Danish Ministry of Health. 1994. Lifetime in Denmark. Second Report from the Life Expectancy Committee of the Ministry of Health, Denmark. Copenhagen: Ministry of Health, The Life Expectancy Committee.
Danmarks Statistik. 2011. Official website, http://www.dst.dk/ (last accessed December 4, 2012).
Dehue, Trudy. 2001. “Establishing the Experimenting Society: The Historical Origin of Social Experimentation According to the Randomized Controlled Design.” American Journal of Psychology 114:283302.
Deleuze, Gilles. 1992. “Postscript on the Societies of Control.” October 59:37.
Deleuze, Gilles, and Guattari, Félix. 1986. Kafka: Toward a Minor Literature. Minneapolis: University of Minneapolis Press.
Desrosières, Alain. 1998. The Politics of Large Numbers: A History of Statistical Reasoning. Cambridge MA: Harvard University Press.
Edgren, Gustaf, Hjalgrim, Henrik, Tran, Trum Nan, Rostgaard, Klaus, Shanwell, Agneta, Titlestad, Kjell Einar, Jakobsson, L., Gridley, Gloria, Wideroff, Louise, Jersild, C., Adami, Joanna, Melbye, Mads, Reilly, Marie, and Nyren, Olof. 2006. “A Population-Based Binational Register for Monitoring Long-Term Outcome and Possible Disease Concordance among Blood Donors and Recipients.” Vox Sanguinis 91:316323.
Edgren, Gustaf, Hjalgrim, Henrik, Reilly, Marie, Tran, Trum Nan, Rostgaard, Klaus, Shanwell, Agneta, Titlestad, Kjell Einar, Adami, Joanna, Wikman, Agneta, Jersild, C., Gridley, Gloria, Wideroff, Louise, Nyren, Olof and Melbye, Mads. 2007. “Risk of Cancer after Blood Transfusion from Donors with Subclinical Cancer: A Retrospective Cohort Study.” Lancet 369:17241730.
Edwards, Paul N. 1999. The Closed World: Computers and the Politics of Discourse. Cambridge MA: MIT Press.
Eriksen, Bjørn. 1967. “Description of The Central Person Register (CPR) in Denmark.” In International Symposium on Automation of Population Register Systems: Proceedings. Jerusalem, Israel, 25–28th September 1967, edited by Kasher, Asa, 6168. Jerusalem: Information Processing Association of Israel.
Folketingstidende. 1968. Forhandlingerne i folketingsaret 1967–68 [Debates in Parliamentary Year 1967–1968], vol. 2, 119, column 583–586. Copenhagen.
Fortun, Mike. 2005. “For an Ethics of Promising, or: A Few Kind Words about James Watson.” New Genetics and Society 24:157173.
Foucault, Michel. 1979. Discipline and Punish: The Birth of the Prison. New York: Vintage Books.
Foucault, Michel. 1988. “Technologies of the Self: A Seminar with Michel Foucault.” In Technologies of the Self: A Seminar with Michel Foucault, edited by Martin, Luther H., Gutman, Huck, and Hutton, Patrick, 1649. London: Tavistock.
Frank, Lone. 2000. “When an Entire Country is a Cohort.” Science 287:23982399.
Frank, Lone. 2003. “Epidemiology: The Epidemiologist's Dream: Denmark.” Science 301:163.
Franklin, Michael, Halevy, Alon, and Maier, David. 2005. “From Databases to Dataspaces: A New Abstraction for Information Management.” SIGMOD Record 34:2733.
Gigerenzer, Gerd, Swijtink, Zeno, Porter, Theodore, Daston, Lorraine, Beatty, John, and Krüger, Lorenz. 1989. The Empire of Chance. How Probability Changed Science and Everyday Life. Cambridge and New York: Cambridge University Press.
Hacking, Ian. 1995. “Looping Effects of Human Kinds.” In Causal Cognition: An Interdisciplinary Approach, edited by Sperber, Dan, Premack, David, and Premack, Ann James, 351383. Oxford: Oxford University Press.
Hallas, Jesper. 2001. “Conducting Pharmacoepidemiologic Research in Denmark.” Pharmacoepidemiology and Drug Safety 10:619623.
Heide, Lars. 1994. “Punched-Card and Computer Applications in Denmark 1911–1970.” History and Technology 11:7799.
Hirdman, Yvonne. 1989. Att lägga livet till rätta: studier i svensk folkhemspolitik [Putting Life in Order: Studies on Swedish Welfare Politics]. Stockholm: Carlsson.
Hirdman, Yvonne. 2006. Alva Myrdal. The Passionate Mind. Bloomington: Indiana University Press.
Holmberg, Christine, Bischof, Christine, and Bauer, Susanne. 2013. “Making Predictions: Computing Populations.” Science, Technology & Human Values 38:398420.
Hoover, Robert N. 2007. “The Evolution of Epidemiologic Research: From Cottage Industry to ‘Big’ Science.” Epidemiology 18:1317.
Hutchby, Ian. 2001. “Technologies, Texts and Affordances.” Sociology 35:441456.
Jensen, Casper Bruun. 2005. “An Experiment in Performative History: Electronic Patient Records as a Future-Generating Device.” Social Studies of Science 35:241267.
Johansen, Christoffer, Boice, John D. Jr., McLaughlin, Joseph K., and Olsen, Jørgen H.. 2001. “Cellular Telephones and Cancer: A Nationwide Cohort Study in Denmark.” Journal of the National Cancer Institute 93:203207.
Johansen, Hans Chr. 2002. Danish Population History 1600–1939. Odense: University of Southern Denmark Press.
Johannesdottir, Sigrun Alba, Horváth-Puhó, Erzsébet, Ehrenstein, Vera, Schmidt, Morten, Pedersen, Lars, and Sørensen, Henrik Toft. 2012. “Existing Data Sources for Clinical Epidemiology: The Danish National Database of Reimbursed Prescriptions.” Clinical Epidemiology 4:303313.
Juel, Kau, and Helweg-Larsen, Karin. 1999. “The Danish Registers of Causes of Death.” Danish Medical Bulletin 46:354357.
Khoury, Muin J., and Little, Julian. 2000. “Human Genome Epidemiologic Reviews: The Beginning of Something HuGe.” American Journal of Epidemiology 151:23.
Koerner, Lisbet. 1999. Linnaeus: Nature and Nation. Cambridge MA: Harvard University Press.
Kyvik, Kirsten Ohm, Christensen, Kaare, Skytthe, Axel, Harvald, Bent, and Holm, Niels V.. 1996. “The Danish Twin Register.” Danish Medical Bulletin 43:467470.
Last, John M. 1983. A Dictionary of Epidemiology. New York: Oxford University Press.
Latour, Bruno. 1987. Science in Action: How to Follow Scientists and Engineers through Society. Cambridge MA: Harvard University Press.
Law, John, and Mol, Annemarie, eds. 2002. Complexities: Social Studies of Knowledge Practices. Durham and London: Duke University Press.
Lie, Einar, and Roll-Hansen, Hege. 2001. Faktisk Talt. Statistikkens historie i Norge [Factually Speaking: The History of Statistics in Norway]. Oslo: Universitetsforlaget.
Lind, Uffe, Mose, Tina, and Knudsen, Lisbeth E.. 2007. “Participation in Environmental Health Research by Placenta Donation – A Perception Study.” Environmental Health 6:36.
Loiborg, Steen, ed. 2002. “Redegørelse om biobanker” [Report on Biobanks]. Copenhagen: Indenrigs-og Sundhedsministeriet.
Madsen, Per Kongshøj. 2008. “Flexicurity in Danish – A Model for Labour Market Reform in Europe?Intereconomics 43:7478.
Melbye, Mads, ed. 2001. “Registerforskning. Enestående danske muligheder” [Registry Research. Unique Danish Possibilities]. Copenhagen: IT- og Forskningsministeriet.
Meulengracht, Asger, and Madsen, Mette. 1982. Registre indenfor sundhedsområdet: En oversigt over registreringssystemer, der kan anvendes i epidemiologisk forskning og i sundhedsplanlægning [Registries within the Health Area. An Overview of Registration Systems that Can Be Applied to Epidemiological Research and Health Planning]. Copenhagen: Dansk Institut for Klinisk Epidemiologi.
Mol, Annemarie. 1999. “Ontological Politics: A Word and Some Questions.” In Actor Network Theory and After, edited by Law, John and Hassard, John, 7489. London: Blackwell.
Mortensen, Preben Bo. 2004. “Registerforskning i Danmark” [Registry Research in Denmark]. Norsk Epidemiologi 14:121124.
Müller-Wille, Staffan, and Rheinberger, Hans-Jörg. 2007. “Heredity: The Formation of an Epistemic Space.” In Heredity Produced: At the Crossroads of Biology, Politics, and Culture, 1500–1870, edited by Müller-Wille, Staffan and Rheinberger, Hans-Jörg, 334. Cambridge MA: MIT Press.
Munk-Jørgensen, Povl, and Mortensen, Preben Bo. 1997. “The Danish Psychiatric Central Register.” Danish Medical Bulletin 44:8284.
Næss, Øyvind, and Schiøtz, Aina. 2008. “Commentary: Kristian Feyer Andvord's Studies on the Epidemiology of Tuberculosis and the Origin of Generation Cohort Analysis.” International Journal of Epidemiology 37:923932.
Nielsen, Henrik. 1991. CPR – Danmarks Folkeregister [CPR – Denmark's Population Registry]. Copenhagen: CPR-Kontoret.
Nielsen, Johs. 1967. “The Development of the Danish Population Register from Manual to Electronic Data Processing Systems Today and Tomorrow.” In International Symposium on Automation of Population Register Systems: Proceedings. Jerusalem, Israel, 2 -28 September 1967, edited by Kasher, Asa, 253264. Jerusalem: Information Processing Association of Israel.
Olsen, Jørgen Helge, Mellemkjaer, Lene, and Friis, Søren. 2004. “Fra kræfttælling til Cancerregister” [From Cancer Counting to the Cancer Registry]. Ugeskrift for læger 166:14581461.
Oppenheimer, Gerald M. 2005. “Becoming the Framingham Study, 1947–1950.” American Journal of Public Health 95:602610.
Paul, Diane B. 1999. Controlling Human Heredity: 1865 to the Present. New Jersey: Humanities Press.
Porter, Theodore M. 1995. Trust in Numbers. The Pursuit of Objectivity in Science and Public Life. Princeton NJ: Princeton University Press.
Redfern, Philipp. 1986. “Which Country Will Follow the Scandinavian Lead in Taking a Register-Based Census of Population?Journal of Official Statistics 2:415424.
Rheinberger, Hans-Jörg. 1997. Towards a Theory of Epistemic Things: Synthesizing Proteins in the Test Tube. Stanford: Stanford University Press.
Roberts, Colin John. 1978. Epidemiology for Clinicians. Tunbridge Wells: Pitman Medical.
Robson, Keith. 1992. “Accounting Numbers as ‘Inscriptions’: Action at a Distance and the Development of Accounting.” Accounting, Organization and Society 17:685708.
Roed, Annette S., Juhl, Claus, and Kamper-Jorgensen, Finn. 1999. “The Danish Prevention Register: A Comprehensive Health and Socio-Economic, Individual Based Register.” Danish Medical Bulletin 46:269272.
Sejersted, Francis. 1993. Demokratisk kapitalisme [Democratic Capitalism]. Oslo: Universitetsforlaget.
Sejersted, Francis. 2011. Age of Social Democracy. Norway and Sweden in the Twentieth Century. Princeton: Princeton University Press.
Sköld, Peter. 2004. “The Birth of Population Statistics in Sweden.” History of the Family 9:521.
Soll-Johanning, H., Bach, E., and Jensen, S. S.. 2003. “Lung and Bladder Cancer among Danish Urban Bus Drivers and Tramway Employees: A Nested Case-Control Study.” Occupational Medicine 53 (1):2533.
Star, Susan Leigh. 1999. “The Ethnography of Infrastructure.” American Behavioral Scientist 43:377391.
Star, Susan Leigh, and Ruhleder, Karen. 1996. “Steps Toward an Ecology of Infrastructure: Design and Access for Large Information Spaces.” Information Systems Research 7 (1):111134.
Stråth, Bo. 2004. “Nordic Modernity: Origins, Trajectories and Prospects.” Thesis Eleven 77:523.
Thygesen, Lau Caspar, Daasnes, Camilla, Thaulow, Ivan, and Brønnum-Hansen, Henrik. 2011. “Introduction to Danish (Nationwide) Registers on Health and Social Issues: Structure, Access, Legislation.” Scandinavian Journal of Public Health 39:1216.
Videbech, Poul, and Nielsen, Johannes. 1979. “Electronic Data Processing in the Danish Cytogenetic Central Register and EDP Problems of Registers in General.” Clinical Genetics 15:137146.
Vineis, Paolo. 2005. “Causality in Epidemiology.” In A History of Epidemiologic Methods and Concepts, edited by Morabia, Alfredo, 337349. Basel: Birkhäuser.
Watson, Ian. 2010. “A Short History of National Identification in Iceland.” Bifröst Journal of Social Science 4:5189.
Weber, Max. 1922. Wirtschaft und Gesellschaft. Tübingen: J. C. B. Mohr (P. Siebeck).
Weisz, George. 2005. “From Clinical Counting to Evidence-Based Medicine.” In Body Counts. Medical Quantification in Historical and Sociological Perspectives, edited by Jorland, Gérard, Opinel, Annick, and Weisz, George, 377393. Montreal: McGill-Queen's University Press.
Willumsen, Hanne. 1999. Folkeregistreringen 75 år i 1999 [75 Years of Population Registration in 1999]. Copenhagen: CPR-Kontoret.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Science in Context
  • ISSN: 0269-8897
  • EISSN: 1474-0664
  • URL: /core/journals/science-in-context
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed