The Establishment of Genetic Counselling in Sweden: 1940–1980

Forskningsoutput: Kapitel i bok/rapport/Conference proceedingKapitel samlingsverk

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 B€o€oks’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 B€o€ok’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.

Detaljer

Författare
Enheter & grupper
Externa organisationer
  • Uppsala universitet
Forskningsområden

Ämnesklassifikation (UKÄ) – OBLIGATORISK

  • Idé- och lärdomshistoria

Nyckelord

  • Genetic counselling, Medical genetics, Clinical genetics, Professional ethos , Biological citizenship
Originalspråkengelska
Titel på värdpublikationHistory of Human Genetics
Undertitel på gästpublikationAspects of Its Development and Global Perspectives
RedaktörerHeike I. Petermann, Peter S. Harper, Susanne Doetz
UtgivningsortSwitzerland
FörlagSpringer International Publishing
Sidor339-366
ISBN (elektroniskt)978-3-319-51783-4
ISBN (tryckt)978-3-319-51782-7
StatusPublished - 2017
PublikationskategoriForskning
Peer review utfördJa