Vortrag: The public understanding of newborn screening

Stammdaten
Titel: The public understanding of newborn screening
Beschreibung: Neonatal screening for genetic disorders is a routine practice for many decades. In particular, screening for PKU has become a standard procedure. However, internationally the way by which neonatal screening is carried out varies notably. Especially for disorders where treatment options are not as straightforward as they are for PKU, screening may be offered, but only on voluntary basis. Austria has decided to expand its programme significantly in 2002. The introduction of tandem-mass-spectrometry plays a crucial role in this regard. With this technology it became possible to screen for 30 inherited disorders of which the Austrian neonatal screening programme comprises as many as 23 conditions. In this paper I will especially address the issue of the public understanding of newborn screening. I will do so by drawing on the Wilson and Jungner guidelines as developed for the WHO. Specifically I will address the 6th principle: “The test should be acceptable to the population” (cf. Dhondt 2007). Taking this requirement seriously this raises important issues of lay understanding of genetic disorders and the way in which an expansion of newborn screening can be perceived. The issue will be contextualised into the historical context in which the Austrian newborn screening programme has been initiated. I will also contrast the Austrian case from other European countries in order to point out differences of the way in which a public understanding of newborn screening can be facilitated.
Schlagworte:
Typ: Poster-Präsentation
Homepage: -
Veranstaltung: "European Meeting on Psychosocial Aspects of Genetics 2008 (in conjunction with the European Human Genetics Conference 2008)" (Barcelona, Spain)
Datum: 02.06.2008
Vortragsstatus:

Beteiligte
Bernhard Wieser
Bernhard.Wieser@aau.at
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Fakultät für Sozialwissenschaften
  Institut für Technik- und Wissenschaftsforschung
B07b (LS) / Universitätsstraße 65-67
9020 Klagenfurt am Wörthersee
Österreich
   andrea.lassnig@aau.at
https://www.aau.at/sts/
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B07b (LS) / Universitätsstraße 65-67
AT - 9020  Klagenfurt am Wörthersee

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