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The Establishment of Genetic Counselling in Sweden: 1940–1980

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History of Human Genetics

Abstract

Genetic counselling in Sweden may be traced to the eugenics movement in the early twentieth century. A rudimentary form of what we might call genetic counselling today was practised within the state governed Medical Board in the 1940s and 1950s by the scientific advisor Nils von Hofsten. In the 1950s, Jan Arvid Böök, professor of medical genetics at Uppsala University, realised the importance of studies in broadly distributed genetic diseases. At the same time as he established a modern laboratory for chromosome analysis, he also held genetic counselling sessions. In Bööks’s ways of navigating between the older traditions of eugenics and the new movement towards individual choice, there are signs of both continuity and discontinuity in relation to the Swedish eugenic project and population policy of the 1930s and 1940s. When the correct chromosome number of man was demonstrated in 1956, medical genetics as well as genetic counselling changed in many ways. New types of diagnosis could be made and new at-risk groups were identified. The geneticists trained at Böök’s department contributed significantly to transfer both laboratory research and counselling activities from the academic setting to the clinic. Development of medical techniques like amniocentesis and prenatal diagnosis further increased the need for more systematised genetic counselling within the healthcare system.

In this chapter we provide an overview of the beginning of genetic counselling in Sweden. More specifically, we analyse the ways in which the first three generations of genetic counsellors constructed their roles as medical and genetic experts and the norms and values that characterized their counselling activities. We argue that this period was characterised by the development of a professional ethos that, while emphasising the importance of individual autonomy, also underscored the psychological and socioeconomic benefits of new diagnostic technologies to decrease the number of genetically diseased children. During the period, there was a marked shift from state-controlled eugenics to individual autonomy. However, we want to emphasise that not only did the individual autonomy increase but also the individual responsibility. At-risk individuals and families were supposed to make informed choices about their reproduction. And even if the individuals were at the centre, societal interests were clearly present, both as norms and values about what constituted a good life and as economic calculations within the healthcare system.

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Notes

  1. 1.

    This chapter builds on research conducted in the project “Better Humans or Reduced Suffering? Historical Perspectives on Medical Genetics and Genetic Counselling 1950–1980”, financed by the Swedish Research Council [Vetenskapsrådet].

  2. 2.

    Petryna 2002; Rose and Novas 2005, 440–463.

  3. 3.

    Foucault 2003; Macey 2009, 186–205.

  4. 4.

    Rabinow and Rose 2006, 193–217.

  5. 5.

    Novas and Rose 2000, 486.

  6. 6.

    Rose and Novas are among the most influential, but see also Lemke 2011 for a critical review.

  7. 7.

    Helén 2004, 28–54; Rose 2001, 1–30.

  8. 8.

    Kerr and Shakespeare 2002, 65–69; Grunewald 2009.

  9. 9.

    Rose and Novas 2005, 440.

  10. 10.

    Kerr 2003, 44–50; Koch 2004, 315–331; Raman and Tutton 2010, 711–734; Comfort 2012.

  11. 11.

    Björkman 2015, 489–513.

  12. 12.

    Cited from Resta 1997, 376. Stern 2012, 20, suggests that Reed had a strong eugenic agenda in many cases.

  13. 13.

    Paul 1995, 121, 125–126; Stern 2012, 18.

  14. 14.

    von Hofsten 1919, 1923, 1927; 1931.

  15. 15.

    Björkman 2011, 161–205.

  16. 16.

    Ibid.

  17. 17.

    von Hofsten 1963.

  18. 18.

    Ibid.

  19. 19.

    Tydén 2002, 301–303; Runcis 1998, 219–232; Björkman 2011, 163–164.

  20. 20.

    Protocol 19 May, 1948. Sinnessjukvårdsbyrån, avd. rättspsykiatri. Korr. i abort- och steriliseringsärenden. 1935, EIX vol. 1, MB, SNA.

  21. 21.

    Ibid.

  22. 22.

    von Hofsten 1963, 50.

  23. 23.

    Protocol 8 August 1950. Sinnessjukvårdsbyrån, avd. rättspsykiatri, Korr. i abort- och steriliseringsärenden, 1935, EIX, vol. 1, MB, SNA.

  24. 24.

    Björkman 2011, 149-150, 191-192.

  25. 25.

    SOU 1960:21, 31–32; von Hofsten to Romanus April 30, 1960 (with appendix). Komm. för med. äktenskapshinder 1956, YK 2178, MB, SNA.

  26. 26.

    SOU 1960:21, appendix 3, 134–140.

  27. 27.

    Hammons to Böök, 19 January 1955, IMG F6:25, UUA.

  28. 28.

    Böök 1955a, see also article manuscript “Medical Genetics and Counselling Practices”, p. 6, IMG F6:25, UUA.

  29. 29.

    Böök to counselee, 20 October 1958, IMG F6:11, UUA.

  30. 30.

    Böök to counselee, 1 June 1956, IMG F6:11, UUA.

  31. 31.

    Ibid.

  32. 32.

    Petita 1959/60, RBI B1:3, UUA.

  33. 33.

    Proposal to the Government, 1 August, 1957 and Petita, 1958/59, RBI B1:3, UUA.

  34. 34.

    Böök 1955a, 174.

  35. 35.

    See also Böök 1955b.

  36. 36.

    RF Collection, diary “EC 2/24/56”, R.G.1.1., Series 800, Box 5:32.

  37. 37.

    Harper, interview with Fraccaro. In: www.genmedhist.org/interviews.

  38. 38.

    Tjio and Levan 1959. See also Martin 2004; Harper 2006; Arnason 2006; de Chadarevian 2015.

  39. 39.

    de Chadarevian 2015, 133.

  40. 40.

    Böök 1959a; Böök 1959b; Fraccaro 1959a and b.

  41. 41.

    Böök to Lejeune, 8 May 1959, IMG B2:2, UUA. Lejeune had some exchange with Böök and the other researchers at the institute in Uppsala. He visited the institute several times in the late 1950s.

  42. 42.

    Böök, Kliniskt cytogenetiska undersökningar vid valda sjukdomar och defekter. Application to SMR, 21 January 1961, SMR F1:15.2, SNA.

  43. 43.

    Both Fraccaro and Lindsten have testified to the increasing problems and conflicts at the laboratory. They both left in the late 1950s/early 1960s. See interviews with Peter Harper in www.genmedhist.org/interviews.

  44. 44.

    The other place to do research on human genetics was Albert Levan’s cytogenetic laboratory, Lund University, but this laboratory was almost entirely devoted to cancer chromosome research.

  45. 45.

    Böök to Schlaug, 25 maj 1959, IMG B2:2, UUA.

  46. 46.

    Böök, Kliniskt cytogenetiska undersökningar vid valda sjukdomar och effekter. Application to SMR, 20 March 1962, SMR F1:151, SNA.

  47. 47.

    Böök to the vice chancellor’s office, Uppsala University, 16 August 1962, IMG B2:3, UUA.

  48. 48.

    Böök to Puck, 18 August 1961, IMG F6:6, UUA.

  49. 49.

    Protocol from Nordic clinic cytogenetic conference, 16–17 December 1961, IMG F6:3, UUA. See also Böök 1962, 1037–1038.

  50. 50.

    Jerring to Vahlquist, 31 December 1962, IMG E1:5, UUA.

  51. 51.

    Gustavson 1964.

  52. 52.

    Lindsten 1963.

  53. 53.

    Lindsten, Strukturella autosomala aberrationers betydelse för uppkomsten av. missbildningar och utvecklingsstörningar hos människa, 17 March 1965; Lindsten, Betydelsen av. strukturella kromosomaberrationer för uppkomsten av. spontana aborter, perinatal dödlighet, missbildningar, och utvecklingsstörningar hos människan, 30 March, 1966. Applications to SMR FI:302, SNA.

  54. 54.

    See Stern 2012, 28–52, for an extensive discussion about risk assessment in genetic counselling.

  55. 55.

    This kind of familial occurrence of Down’s syndrome was discovered by several cytogeneticists in 1960, see, for example, Fraccaro 1960.

  56. 56.

    See, for example, Gustavson 1967.

  57. 57.

    Ibid.

  58. 58.

    See Stern 2012, 147–167, for a brief history of the development of amniocentesis.

  59. 59.

    Kjessler 1972.

  60. 60.

    Åkesson 1973.

  61. 61.

    The risk for older women to get a child with Down’s syndrome had been demonstrated by Penrose. See Kevles [1985] 1995, 161–162.

  62. 62.

    Bartsch et al. 1973.

  63. 63.

    Munthe 1996, 22, 26, 29–30.

  64. 64.

    Bartsch et al. 1973.

  65. 65.

    Lindsten et al. 1975.

  66. 66.

    See Munthe 1996, 37–50, for an ethical analysis of the preventive argument.

  67. 67.

    Zetterström and Lindsten to the Social Board, 31 January 1973, SB 5E1:191, SNA.

  68. 68.

    Lindsten 1973, 40.

  69. 69.

    Lennerhed 2015.

  70. 70.

    SOU 1971:58, Rätten till abort.

  71. 71.

    Svennerholm 1973, 37–38.

  72. 72.

    Lindsten (Ed.) 1976.

  73. 73.

    Müntzing 1964, 359–360.

  74. 74.

    Böök, “Prevention and Treatment of cytogenetic Disorders”, IMG F6:29, p. 3, UUA.

  75. 75.

    Lindsten et al. 1975. Cf. Lindsten (ed.) 1976, which argues that psychologists should be tied to the genetic counselling.

  76. 76.

    Munthe 1996, 59–62, suggests that the economic motives were primarily used in order to establish clinical genetics.

  77. 77.

    Svenska läkaresällskapets delegation for medicinsk etik, 1979.

  78. 78.

    Helén 2004.

References

Archival Sources

  • Rockefeller Archive Center (RF), New York, USA: Sweden 800, 1.1, Projects, Box 5, Folder 32

    Google Scholar 

  • Swedish National Archive (SNA), Stockholm, Sweden [Riksarkivet]

    Google Scholar 

  • Archive of the Medical Board (MB) [Medicinalstyrelsens arkiv]: Sinnessjukvårdsbyrån, avd. för rättspsykiatri. Korrespondens i abort- och steriliseringsärenden. 1935, EIX, vol. 1

    Google Scholar 

  • Archive of the Social Board (SB) [Socialstyrelsens arkiv]: Sjukhusbyrån, 5E1:191

    Google Scholar 

  • Kommittén för medicinska äktenskapshinder 1956: YK 2178.

    Google Scholar 

  • Statens medicinska forskningsråd (SMR) [State Medical Research Council]: FI:151, FI:302.

    Google Scholar 

  • Uppsala University Archive (UUA), Uppsala, Sweden [Uppsala universitetsarkiv]:

    Google Scholar 

  • Institutionen för medicinsk genetik (IMG): F6:6, F6:11, F6:25, F6:29, B2:1–3.

    Google Scholar 

  • Rasbiologiska institutet (RBI): PETITA 1959/1969.

    Google Scholar 

  • Government Publications

    Google Scholar 

  • SOU 1960:21, Medicinska äktenskapshinder.

    Google Scholar 

  • SOU 1971:58 Rätten till abort.

    Google Scholar 

Literature

  • Åkesson, Hans O. (1973): Prenatal diagnostik – kromosomgenetiska aspekter. In: Lindström, Bertil, Sture Rayner and Rune Sannerstedt (Eds.): Psykiskt utvecklingsstörda: underlag, indikationer och riktlinjer för medicinsk behandling. Mölndal: A. Lindgren & Söner AB. 28–31.

    Google Scholar 

  • Arnason, Ulfur (2006): 50 years after – examination of some circumstances around the establishment of the correct chromosome number in man. Hereditas 143:202–211.

    Article  PubMed  Google Scholar 

  • Bartsch, Fritz, Jan Lundberg, Jan Wahlström (1973): Antenatal kromosomdiagnostik. Läkartidningen 71: 3388–3390.

    Google Scholar 

  • Björkman, Maria (2011): Den anfrätta stammen. Nils von Hofsten, eugeniken och steriliseringarna 1909-1963. Lund: Diss. Arkiv.

    Google Scholar 

  • Björkman, Maria (2015): The Emergence of Genetic Counseling in Sweden: Examples from Eugenics and Medical Genetics. Science in Context 28: 489–513.

    Article  PubMed  Google Scholar 

  • Böök, Jan-Arvid (1955a): Heredity Counseling. Medical Genetics and Counseling Practices. Eugenics Quarterly 2:174–183.

    Article  Google Scholar 

  • Böök, Jan-Arvid (1955b): Atomenergin och risken för genetiska skador. Läkartidningen 52: 2585–2589.

    Google Scholar 

  • Böök, Jan-Arvid (1959a): Chromosomal variations in man and their clinical significance. Acta Soc. Med. (Upsala) 64: vii-viii.

    Google Scholar 

  • Böök, Jan-Arvid (1962): Nordisk konferens för klinisk cytogenetik. Nordisk medicin 68:1037–1038.

    Google Scholar 

  • Böök, Jan-Arvid, Marco Fraccaro, Jan Lindsten (1959b): Cytogenetical observations in mongolism. Acta Paed. (Uppsala) 48:453–468.

    Google Scholar 

  • Comfort, Nathaniel (2012): The Science of Human Perfection. How Genes Became the Heart of American Medicine. New Haven: Yale Univ. Press.

    Google Scholar 

  • De Chadarevian, Soraya (2015): Chromosome Photography and the Human Karyotype. Historical Studies in the Natural Sciences 45: 115–146.

    Google Scholar 

  • Foucault, Michel (2003): Society Must Be Defended. Lectures at the Collège de France 1975–1976. London: Allen Lane.

    Google Scholar 

  • Fraccaro, Marco, Kurt Kaijser, Jan Lindsten (1959a): Chromosome complement in gonadal dysgenesis (Turner’s syndrome). The Lancet 273 (7078): 886.

    Article  Google Scholar 

  • Fraccaro, Marco, Kurt Kaijser, Jan Lindsten (1959b): Chromosome complement in parents of patients with gonadal dysgenesis (Turner’s syndrome). The Lancet 274 (7111): 1090.

    Article  Google Scholar 

  • Fraccaro, Marco, Kurt Kaijser, Jan Lindsten (1960): Chromosomal abnormalities in father and mongol child. The Lancet 275 (7127): 724–727.

    Article  Google Scholar 

  • Grunewald, Karl (2009): Från idiot till medborgare, Stockholm: Gothia.

    Google Scholar 

  • Gustavson, Karl-Henrik (1964): Down’s syndrome: A clinical and cytogenetical investigation. Diss. Institute for Medical Genetics, Uppsala.

    Google Scholar 

  • Gustavson, Karl-Henrik (1967): Genetisk rådgivning ur pediatrisk synvinkel. Läkartidningen 64: 3137–3150.

    CAS  PubMed  Google Scholar 

  • Harper, Peter S. (2006): The discovery of the human chromosome number in Lund, 1955-1956. Human Genetics 119:226–232.

    Article  PubMed  Google Scholar 

  • Helén, Ilpo (2004): Technics over life: risk, ethics and the existential condition in high-tech antenatal care. Economy and Society 33: 28–54.

    Article  Google Scholar 

  • Kerr, Anne (2003): Genetics and citizenship. Society 40(6): 44–50.

    Article  Google Scholar 

  • Kerr, Anne and Shakespeare, Tom (2002): Genetic politics. From eugenics to genome. Cheltenham: New Clarion Pr.

    Google Scholar 

  • Kevles, Daniel J. (1985): In the Name of Eugenics: Genetics and the Uses of Human Heredity. 4th ed. Cambridge, Mass.: Harvard Univ Pr.

    Google Scholar 

  • Kevles, Daniel J. (1995): In the Name of Eugenics: Genetics and the Uses of Human Heredity. Cambridge, Mass: Harvad University Press.

    Google Scholar 

  • Kjessler, Berndt u.a. (1972): Prenatal diagnostik av genetisk sjukdom. Läkartidningen 69: 2362–2363.

    Google Scholar 

  • Koch, Lene (2004): The meaning of eugenics: Reflections on the government of genetic knowledge in the past and the present. Science in Context 17: 315–331.

    Article  PubMed  Google Scholar 

  • Lemke, Thomas (2011): Biopolitics. New York, London: New York Univ. Pr.

    Google Scholar 

  • Lennerhed, Lena (2015): Kvinnan, aborten och teratologin. Lychnos, Lärdomshistoriska samfundet (Uppsala): 141–163.

    Google Scholar 

  • Lindsten, Jan (1963): The nature and origin of X chromosome aberrations in Turner’s syndrome: a cytogenetical and clinical study of 57 patients. Diss., Stockholm: Almqvist & Wiksell.

    Google Scholar 

  • Lindsten, Jan (1973): Prenatal diagnostik – vunna erfarenheter och framtida möjligheter. In: Lindström, Bertil, Sture Rayner and Rune Sannerstedt (Eds.): Psykiskt utvecklingsstörda: underlag, indikationer och riktlinjer för medicinsk behandling. Mölndal: A. Lindgren & Söner AB. 39–42.

    Google Scholar 

  • Lindsten, Jan (Ed.) (1976): Klinisk genetik. Supplement till Medicinsk service. Stockholm:. Socialstyrelsen.

    Google Scholar 

  • Lindsten, Jan, Birgitta Eneroth, Bo Lambert (1975): Genetisk rådgivning i sjukvården – etiska och psykologiska aspekter. Nordisk medicin 9 (3): 71–78.

    Google Scholar 

  • Macey, David (2009): Rethinking Biopolitics, Race and Power in the Wake of Foucault. Theory, Culture & Society 26:186–205.

    Article  Google Scholar 

  • Martin, Aryn (2004): Can’t Any Body Count? Counting as an Epistemic Theme in the History of Human Chromosomes. Social Studies of Science 34: 923–948.

    Article  Google Scholar 

  • Munthe, Christian (1996): The Moral Roots of Prenatal Diagnosis. Ethical Aspects of the Early Introduction and Presentation of Prenatal Diagnosis in Sweden. Göteborg: Centre for Research Ethics. (Studies in Research Ethics. 7).

    Google Scholar 

  • Müntzing, Arne (1964): Ärftlighetsforskning. En översikt av metoder och huvudresultat. 3th ed. Stockholm: LTs förlag.

    Google Scholar 

  • Novas, Carlos, Nikolas Rose (2000): Genetic Risk and the Birth of the Somatic Individual. Economy and Society 29: 485–513.

    Article  Google Scholar 

  • Paul, Diane B. (1995): Controlling Human Heredity. 1865 to the present. New Jersey: Humanities Press International.

    Google Scholar 

  • Petryna, Andriana (2002): Life Exposed: Biological Citizens After Chernobyl. Princeton: Princeton Univ. Pr.

    Google Scholar 

  • Rabinow, Paul, Nikolas Rose (2006): Biopower Today. BioSocieties 1: 193–217.

    Article  Google Scholar 

  • Raman, Sujatha, Richard Tutton (2010): Life, Science, and Biopower. Science, Technology, & Human Values 35: 711–734.

    Article  Google Scholar 

  • Resta, Robert (1997): The Historical Perspective: Sheldon Reed and 50 Years of Genetic Counseling. Journal of Genetic Counseling 6: 375–377.

    Article  CAS  PubMed  Google Scholar 

  • Rose, Nikolas (2001): The politics of life itself. Theory, Culture & Society 18(6): 1–30.

    Google Scholar 

  • Rose, Nikolas, Carlos Novas (2005): Biological Citizenship. In: Ong, Aihwa and Stehpen J. Collier (Eds.) Global assemblages: technology, politics, and ethics as anthropological problems. Malden, MA: Blackwell Publish. 440–463.

    Google Scholar 

  • Runcis, Maija (1998): Steriliseringar i folkhemmet. Diss. Univ., Stockholm.

    Google Scholar 

  • Stern, Alexandra Minna, (2012): Telling Genes: the story of genetic counseling in America. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  • Svennerholm, Lars (1973): Prenatal diagnostik av ärftliga metaboliska sjukdomar. In: Lindström, Bertil, Sture Rayner and Rune Sannerstedt (Eds.): Psykiskt utvecklingsstörda: underlag, indikationer och riktlinjer för medicinsk behandling. Mölndal: A. Lindgren & Söner AB. 32–38.

    Google Scholar 

  • Svenska läkaresällskapets delegation för medicinsk etik (1979): Etiska synpunkter på fosterdiagnostik, Läkartidningen 76: 2540–2542.

    Google Scholar 

  • Tjio, Joe H., Albert Levan (1959): The chromosome number of man. Hereditas 42: 1–6.

    Article  Google Scholar 

  • Tydén, Mattias (2002): Från politik till praktik. De svenska steriliseringslagarna 1935–1975. Diss. Univ., Stockholm.

    Google Scholar 

  • von Hofsten, Nils (1919): Ärftlighetslära. Föreläsningar vid Uppsala universitet 1916–1917. Stockholm: Norstedt.

    Google Scholar 

  • von Hofsten, Nils (1923): Ärftlighet och utveckling. Stockholm: Bonnier.

    Google Scholar 

  • von Hofsten, Nils (1927): Ärftlighetslärans grunder del 1. Stockholm: Medicinskt folkbibliotek.

    Google Scholar 

  • von Hofsten, Nils (1931): Ärftlighetslärans grunder del 2. Stockholm: Medicinskt folkbibliotek.

    Google Scholar 

  • von Hofsten, Nils (1963): Steriliseringar i Sverige 1941–1953. Stockholm. (Socialmedicinsk tidskrifts skriftserie. 28.)

    Google Scholar 

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Authors and Affiliations

  1. Department of History of Science and Ideas, Uppsala University, Box 629, 751 26 Uppsala, Uppsala, Sweden

    Maria Björkman Ph.D., M.A

  2. Departments of Arts and Cultural Sciences, Lund University, Lund, Sweden

    Anna Tunlid

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  1. Maria Björkman Ph.D., M.A
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Correspondence to Maria Björkman Ph.D., M.A .

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Editors and Affiliations

  1. Institut für Ethik, Geschichte und Theorie der Medizin, Westfälische Wilhelms-Universität, Münster, Nordrhein-Westfalen, Germany

    Heike I. Petermann

  2. Institute of Medical Genetics, Cardiff University, Cardiff, United Kingdom

    Peter S. Harper

  3. Institut für Geschichte der Medizin und Ethik in der Medizin, Charité-Universitätsmedizin, Berlin, Berlin, Germany

    Susanne Doetz

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Björkman, M., Tunlid, A. (2017). The Establishment of Genetic Counselling in Sweden: 1940–1980. In: Petermann, H., Harper, P., Doetz, S. (eds) History of Human Genetics. Springer, Cham. https://doi.org/10.1007/978-3-319-51783-4_21

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