The Establishment of Genetic Counselling in Sweden : 1940–1980

• Genetic counselling in Sweden may be traced to the eugenics movementin the early twentieth century. A rudimentary form of what we might call geneticcounselling today was practised within the state governed Medical Board in the1940s and 1950s by the scientific advisor Nils von Hofsten. In the 1950s, Jan ArvidBöök, professor of medical genetics at Uppsala University, realised the importanceof studies in broadly distributed genetic diseases. At the same time as he establisheda modern laboratory for chromosome analysis, he also held genetic counsellingsessions. In B€o€oks’s ways of navigating between the older traditions of eugenicsand the new movement towards individual choice, there are signs of both continuityand discontinuity in relation to the Swedish eugenic project and population policyof the 1930s and 1940s. When the correct chromosome number of man wasdemonstrated in 1956, medical genetics as well as genetic counselling changed inmany ways. New types of diagnosis could be made and new at-risk groups wereidentified. The geneticists trained at B€o€ok’s department contributed significantly totransfer both laboratory research and counselling activities from the academicsetting to the clinic. Development of medical techniques like amniocentesis andprenatal diagnosis further increased the need for more systematised geneticcounselling within the healthcare system.In this chapter we provide an overview of the beginning of genetic counselling inSweden. More specifically, we analyse the ways in which the first three generationsof genetic counsellors constructed their roles as medical and genetic experts and thenorms and values that characterized their counselling activities. We argue that this period was characterised by the development of a professional ethos that, whileemphasising 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 markedshift from state-controlled eugenics to individual autonomy. However, we want toemphasise that not only did the individual autonomy increase but also the individualresponsibility. At-risk individuals and families were supposed to make informedchoices about their reproduction. And even if the individuals were at the centre,societal interests were clearly present, both as norms and values about whatconstituted a good life and as economic calculations within the healthcare system.

Ämnesord

HUMANIORA  -- Filosofi, etik och religion -- Idé- och lärdomshistoria (hsv//swe)

HUMANITIES  -- Philosophy, Ethics and Religion -- History of Ideas (hsv//eng)

Nyckelord

Genetic counselling

Medical genetics

Clinical genetics

Professional ethos

Biological citizenship

Genetic counselling

Idé- och lärdomshistoria

Publikations- och innehållstyp

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