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

Published online by Cambridge University Press:  29 April 2014

Susanne Bauer
Susanne Bauer*
Affiliation:
Goethe University Frankfurt E-mail: [email protected]
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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.”

Type
Research Article
Information
Science in Context , Volume 27 , Issue 2: Science, Technology, Medicine – and the State: The Science-State Nexus in Scandinavia, 1850–1980 , June 2014 , pp. 187 - 213
Copyright
Copyright © Cambridge University Press 2014 

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References

Althusser, Louis. 1971. Lenin and Philosophy and Other Essays. New York and London: New Left Review.Google Scholar
Aly, Götz, and Roth, Karl Heinz. 2000. Die restlose Erfassung. Volkszählen, Identifizieren, Aussondern im Nationalsozialismus. Frankfurt am Main: Fischer.Google Scholar
Amin, Ash, and Thomas, Damian. 1996. “The Negotiated Economy: State and Civic Institutions in Denmark.” Economy and Society 25:255–281.Google Scholar
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):263–268.Google Scholar
Appadurai, Arjun. 1990. “Disjuncture and Difference in the Global Cultural Economy.” Theory, Culture & Society 7:295–310.CrossRefGoogle Scholar
Armstrong, David. 1995. “The Rise of Surveillance Medicine.” Sociology of Health & Illness 17:393–404.CrossRefGoogle Scholar
Aronowitz, Robert. 1998. Making Sense of Illness: Science, Society and Disease. Cambridge: Cambridge University Press.Google Scholar
Asdal, Kristin. 2011. “The Office: The Weakness of Numbers and the Production of Non-Authority.” Accounting, Organizations and Society 36:1–9.CrossRefGoogle Scholar
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 105:71–85.Google Scholar
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 39:415–426.CrossRefGoogle ScholarPubMed
Bauer, Susanne. 2013. “Modeling Population Health: Reflections on the Performativity of Epidemiological Practice.” Medical Anthropology Quarterly 27(4):510–530.CrossRefGoogle Scholar
Beck, Ulrich, Giddens, Anthony, and Lash, Scott. 1996. Reflexive Modernisierung: Eine Kontroverse. Frankfurt am Main: Suhrkamp.Google Scholar
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, 335–358. Montreal: McGill-Queen's University Press.Google Scholar
Bowker, Geoffrey C., and Star, Susan Leigh. 1999. Sorting Things Out: Classification and Its Consequences. Cambridge MA: MIT Press.Google Scholar
Breslow, Norman E., and Day, Nicholas E.. 1980. Statistical Methods in Cancer Research, vol. I: The Analysis of Case-Control Studies. Lyon: IARC.Google Scholar
Breslow, Norman E., and Day, Nicholas E.. 1987. Statistical Methods in Cancer Research, vol. II: The Design and Analysis of Cohort Studies. Lyon: IARC.Google Scholar
Callon, Michel, and Muniesa, Fabian. 2005. “Peripheral Vision: Economic Markets as Calculative Collective Devices.” Organization Studies 26:1229–1250.CrossRefGoogle Scholar
Calltorp, Johan. 1996. “Det nordiska laboratoriet en guldgruva för hälso-och sjukvårdsforskning” [The Nordic Laboratory: A Gold Mine for Health Services Research]. Nordisk medicin 111:13–15.Google Scholar
Campbell, John L., and Pedersen, Ove K.. 2007. “The Varieties of Capitalism and Hybrid Success: Denmark in the Global Economy.” Comparative Political Studies 40:307–332.Google Scholar
Canguilhem, Georges. 1978. The Normal and the Pathological, trans. by Fawcett, Carolyn R. and Cohen, Robert S.. New York: Zone Books.Google Scholar
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, 533–538. Jerusalem: Information Processing Association of Israel.Google Scholar
Clemmesen, Johannes. 1948. “The Danish Cancer Registry: Problems and Results.” Acta pathologica et microbiologica Scandinavica 25:26–33.Google Scholar
Clemmesen, Johannes. 1986. En kræftforskers oplevelser 1908–1948 [A Cancer Researcher's Experiences, 1908–1948]. Copenhagen: Attika.Google Scholar
Clemmesen, Johannes. 1988. En kræftforskers oplevelser 1948–1988 [A Cancer Researcher's Experiences, 1948–1988]. Copenhagen: Attika.Google Scholar
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).Google Scholar
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.Google Scholar
Danmarks Statistik. 2011. Official website, http://www.dst.dk/ (last accessed December 4, 2012).Google Scholar
Dehue, Trudy. 2001. “Establishing the Experimenting Society: The Historical Origin of Social Experimentation According to the Randomized Controlled Design.” American Journal of Psychology 114:283–302.Google Scholar
Deleuze, Gilles. 1992. “Postscript on the Societies of Control.” October 59:3–7.Google Scholar
Deleuze, Gilles, and Guattari, Félix. 1986. Kafka: Toward a Minor Literature. Minneapolis: University of Minneapolis Press.Google Scholar
Desrosières, Alain. 1998. The Politics of Large Numbers: A History of Statistical Reasoning. Cambridge MA: Harvard University Press.Google Scholar
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 91:316–323.CrossRefGoogle Scholar
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 369:1724–1730.Google Scholar
Edwards, Paul N. 1999. The Closed World: Computers and the Politics of Discourse. Cambridge MA: MIT Press.Google Scholar
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, 61–68. Jerusalem: Information Processing Association of Israel.Google Scholar
Folketingstidende. 1968. Forhandlingerne i folketingsaret 1967–68 [Debates in Parliamentary Year 1967–1968], vol. 2, 119, column 583–586. Copenhagen.Google Scholar
Fortun, Mike. 2005. “For an Ethics of Promising, or: A Few Kind Words about James Watson.” New Genetics and Society 24:157–173.CrossRefGoogle ScholarPubMed
Foucault, Michel. 1979. Discipline and Punish: The Birth of the Prison. New York: Vintage Books.Google Scholar
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, 16–49. London: Tavistock.Google Scholar
Frank, Lone. 2000. “When an Entire Country is a Cohort.” Science 287:2398–2399.Google Scholar
Frank, Lone. 2003. “Epidemiology: The Epidemiologist's Dream: Denmark.” Science 301:163.Google Scholar
Franklin, Michael, Halevy, Alon, and Maier, David. 2005. “From Databases to Dataspaces: A New Abstraction for Information Management.” SIGMOD Record 34:27–33.Google Scholar
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.Google Scholar
Hacking, Ian. 1995. “Looping Effects of Human Kinds.” In Causal Cognition: An Interdisciplinary Approach, edited by Sperber, Dan, Premack, David, and Premack, Ann James, 351–383. Oxford: Oxford University Press.Google Scholar
Hallas, Jesper. 2001. “Conducting Pharmacoepidemiologic Research in Denmark.” Pharmacoepidemiology and Drug Safety 10:619–623.Google Scholar
Heide, Lars. 1994. “Punched-Card and Computer Applications in Denmark 1911–1970.” History and Technology 11:77–99.CrossRefGoogle Scholar
Hirdman, Yvonne. 1989. Att lägga livet till rätta: studier i svensk folkhemspolitik [Putting Life in Order: Studies on Swedish Welfare Politics]. Stockholm: Carlsson.Google Scholar
Hirdman, Yvonne. 2006. Alva Myrdal. The Passionate Mind. Bloomington: Indiana University Press.Google Scholar
Holmberg, Christine, Bischof, Christine, and Bauer, Susanne. 2013. “Making Predictions: Computing Populations.” Science, Technology & Human Values 38:398–420.Google Scholar
Hoover, Robert N. 2007. “The Evolution of Epidemiologic Research: From Cottage Industry to ‘Big’ Science.” Epidemiology 18:13–17.Google Scholar
Hutchby, Ian. 2001. “Technologies, Texts and Affordances.” Sociology 35:441–456.Google Scholar
Jensen, Casper Bruun. 2005. “An Experiment in Performative History: Electronic Patient Records as a Future-Generating Device.” Social Studies of Science 35:241–267.CrossRefGoogle Scholar
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 93:203–207.CrossRefGoogle Scholar
Johansen, Hans Chr. 2002. Danish Population History 1600–1939. Odense: University of Southern Denmark Press.Google Scholar
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 4:303–313.CrossRefGoogle ScholarPubMed
Juel, Kau, and Helweg-Larsen, Karin. 1999. “The Danish Registers of Causes of Death.” Danish Medical Bulletin 46:354–357.Google Scholar
Khoury, Muin J., and Little, Julian. 2000. “Human Genome Epidemiologic Reviews: The Beginning of Something HuGe.” American Journal of Epidemiology 151:2–3.Google Scholar
Koerner, Lisbet. 1999. Linnaeus: Nature and Nation. Cambridge MA: Harvard University Press.Google Scholar
Kyvik, Kirsten Ohm, Christensen, Kaare, Skytthe, Axel, Harvald, Bent, and Holm, Niels V.. 1996. “The Danish Twin Register.” Danish Medical Bulletin 43:467–470.Google Scholar
Last, John M. 1983. A Dictionary of Epidemiology. New York: Oxford University Press.Google Scholar
Latour, Bruno. 1987. Science in Action: How to Follow Scientists and Engineers through Society. Cambridge MA: Harvard University Press.Google Scholar
Law, John, and Mol, Annemarie, eds. 2002. Complexities: Social Studies of Knowledge Practices. Durham and London: Duke University Press.Google Scholar
Lie, Einar, and Roll-Hansen, Hege. 2001. Faktisk Talt. Statistikkens historie i Norge [Factually Speaking: The History of Statistics in Norway]. Oslo: Universitetsforlaget.Google Scholar
Lind, Uffe, Mose, Tina, and Knudsen, Lisbeth E.. 2007. “Participation in Environmental Health Research by Placenta Donation – A Perception Study.” Environmental Health 6:36.Google Scholar
Loiborg, Steen, ed. 2002. “Redegørelse om biobanker” [Report on Biobanks]. Copenhagen: Indenrigs-og Sundhedsministeriet.Google Scholar
Madsen, Per Kongshøj. 2008. “Flexicurity in Danish – A Model for Labour Market Reform in Europe?” Intereconomics 43:74–78.Google Scholar
Melbye, Mads, ed. 2001. “Registerforskning. Enestående danske muligheder” [Registry Research. Unique Danish Possibilities]. Copenhagen: IT- og Forskningsministeriet.Google Scholar
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.Google Scholar
Mol, Annemarie. 1999. “Ontological Politics: A Word and Some Questions.” In Actor Network Theory and After, edited by Law, John and Hassard, John, 74–89. London: Blackwell.Google Scholar
Mortensen, Preben Bo. 2004. “Registerforskning i Danmark” [Registry Research in Denmark]. Norsk Epidemiologi 14:121–124.Google Scholar
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, 3–34. Cambridge MA: MIT Press.Google Scholar
Munk-Jørgensen, Povl, and Mortensen, Preben Bo. 1997. “The Danish Psychiatric Central Register.” Danish Medical Bulletin 44:82–84.Google ScholarPubMed
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 37:923–932.Google Scholar
Nielsen, Henrik. 1991. CPR – Danmarks Folkeregister [CPR – Denmark's Population Registry]. Copenhagen: CPR-Kontoret.Google Scholar
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, 253–264. Jerusalem: Information Processing Association of Israel.Google Scholar
Olsen, Jørgen Helge, Mellemkjaer, Lene, and Friis, Søren. 2004. “Fra kræfttælling til Cancerregister” [From Cancer Counting to the Cancer Registry]. Ugeskrift for læger 166:1458–1461.Google Scholar
Oppenheimer, Gerald M. 2005. “Becoming the Framingham Study, 1947–1950.” American Journal of Public Health 95:602–610.CrossRefGoogle ScholarPubMed
Paul, Diane B. 1999. Controlling Human Heredity: 1865 to the Present. New Jersey: Humanities Press.Google Scholar
Porter, Theodore M. 1995. Trust in Numbers. The Pursuit of Objectivity in Science and Public Life. Princeton NJ: Princeton University Press.Google Scholar
Redfern, Philipp. 1986. “Which Country Will Follow the Scandinavian Lead in Taking a Register-Based Census of Population?” Journal of Official Statistics 2:415–424.Google Scholar
Rheinberger, Hans-Jörg. 1997. Towards a Theory of Epistemic Things: Synthesizing Proteins in the Test Tube. Stanford: Stanford University Press.Google Scholar
Roberts, Colin John. 1978. Epidemiology for Clinicians. Tunbridge Wells: Pitman Medical.Google Scholar
Robson, Keith. 1992. “Accounting Numbers as ‘Inscriptions’: Action at a Distance and the Development of Accounting.” Accounting, Organization and Society 17:685–708.Google Scholar
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 46:269–272.Google Scholar
Sejersted, Francis. 1993. Demokratisk kapitalisme [Democratic Capitalism]. Oslo: Universitetsforlaget.Google Scholar
Sejersted, Francis. 2011. Age of Social Democracy. Norway and Sweden in the Twentieth Century. Princeton: Princeton University Press.CrossRefGoogle Scholar
Sköld, Peter. 2004. “The Birth of Population Statistics in Sweden.” History of the Family 9:5–21.Google Scholar
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):25–33.Google Scholar
Star, Susan Leigh. 1999. “The Ethnography of Infrastructure.” American Behavioral Scientist 43:377–391.Google Scholar
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):111–134.Google Scholar
Stråth, Bo. 2004. “Nordic Modernity: Origins, Trajectories and Prospects.” Thesis Eleven 77:5–23.Google Scholar
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 39:12–16.Google Scholar
Videbech, Poul, and Nielsen, Johannes. 1979. “Electronic Data Processing in the Danish Cytogenetic Central Register and EDP Problems of Registers in General.” Clinical Genetics 15:137–146.Google Scholar
Vineis, Paolo. 2005. “Causality in Epidemiology.” In A History of Epidemiologic Methods and Concepts, edited by Morabia, Alfredo, 337–349. Basel: Birkhäuser.Google Scholar
Watson, Ian. 2010. “A Short History of National Identification in Iceland.” Bifröst Journal of Social Science 4:51–89.Google Scholar
Weber, Max. 1922. Wirtschaft und Gesellschaft. Tübingen: J. C. B. Mohr (P. Siebeck).Google Scholar
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, 377–393. Montreal: McGill-Queen's University Press.Google Scholar
Willumsen, Hanne. 1999. Folkeregistreringen 75 år i 1999 [75 Years of Population Registration in 1999]. Copenhagen: CPR-Kontoret.Google Scholar