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The Establishment of Genetic Counselling in Sweden : 1940–1980

Björkman, Maria and Tunlid, Anna LU (2017) In History of Human Genetics p.339-366
Abstract (Swedish)
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... (More)
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. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Chapter in Book/Report/Conference proceeding
publication status
published
subject
keywords
Genetic counselling, Medical genetics, Clinical genetics, Professional ethos , Biological citizenship
in
History of Human Genetics
editor
Petermann, Heike I.; Harper, Peter S.; Doetz, Susanne; ; and
pages
339 - 366
publisher
Springer International Publishing
ISBN
978-3-319-51782-7
978-3-319-51783-4
language
English
LU publication?
yes
id
10bbaede-102f-4302-ad22-9b29a360fd10
date added to LUP
2017-10-16 16:35:19
date last changed
2017-11-14 09:52:35
@inbook{10bbaede-102f-4302-ad22-9b29a360fd10,
  abstract     = {Genetic counselling in Sweden may be traced to the eugenics movement<br/>in the early twentieth century. A rudimentary form of what we might call genetic<br/>counselling today was practised within the state governed Medical Board in the<br/>1940s and 1950s by the scientific advisor Nils von Hofsten. In the 1950s, Jan Arvid<br/>Böök, professor of medical genetics at Uppsala University, realised the importance<br/>of studies in broadly distributed genetic diseases. At the same time as he established<br/>a modern laboratory for chromosome analysis, he also held genetic counselling<br/>sessions. In B€o€oks’s ways of navigating between the older traditions of eugenics<br/>and the new movement towards individual choice, there are signs of both continuity<br/>and discontinuity in relation to the Swedish eugenic project and population policy<br/>of the 1930s and 1940s. When the correct chromosome number of man was<br/>demonstrated in 1956, medical genetics as well as genetic counselling changed in<br/>many ways. New types of diagnosis could be made and new at-risk groups were<br/>identified. The geneticists trained at B€o€ok’s department contributed significantly to<br/>transfer both laboratory research and counselling activities from the academic<br/>setting to the clinic. Development of medical techniques like amniocentesis and<br/>prenatal diagnosis further increased the need for more systematised genetic<br/>counselling within the healthcare system.<br/>In this chapter we provide an overview of the beginning of genetic counselling in<br/>Sweden. More specifically, we analyse the ways in which the first three generations<br/>of genetic counsellors constructed their roles as medical and genetic experts and the<br/>norms and values that characterized their counselling activities. We argue that this period was characterised by the development of a professional ethos that, while<br/>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<br/>shift from state-controlled eugenics to individual autonomy. However, we want to<br/>emphasise that not only did the individual autonomy increase but also the individual<br/>responsibility. At-risk individuals and families were supposed to make informed<br/>choices about their reproduction. And even if the individuals were at the centre,<br/>societal interests were clearly present, both as norms and values about what<br/>constituted a good life and as economic calculations within the healthcare system.},
  author       = {Björkman, Maria and Tunlid, Anna},
  editor       = {Petermann, Heike I. and Harper, Peter S. and Doetz, Susanne},
  isbn         = {978-3-319-51782-7},
  keyword      = {Genetic counselling,Medical genetics,Clinical genetics,Professional ethos ,Biological citizenship},
  language     = {eng},
  pages        = {339--366},
  publisher    = {Springer International Publishing},
  series       = {History of Human Genetics},
  title        = {The Establishment of Genetic Counselling in Sweden : 1940–1980},
  year         = {2017},
}