Lecture: Accountability practices for newborn screening

Master data
Title: Accountability practices for newborn screening
Description: Due to the advancements of tandem mass spectrometry (MS/MS), newborn screening is currently one of the most dynamic fields in clinically applied testing for genetic disorders. A number of European countries have introduced MS/MS and thereby expanded their screening programme substantially. In this paper I will compare UK and Austria, since they represent two ends of the European spectrum and pursue quite different screening approaches. National differences between European countries cannot only be found regarding the design of the programmes and how comprehensive they are, but also the ways in which screening programmes are explained to the public and how legitimacy is obtained for them, differs considerably. Focussing on the decision making processes behind the design and expansion of newborn screening I discuss the observed differences in the accountability practices in the light of Sheila Jasanoff’s concept of “civic epistemology” (cf. Jasanoff 2005). Whereas the UK pursues an accountability model that is grounded in the direct display of firsthand scientific evidence Austria refers to law-making and expert committees who are officially entitled to advice regulation. There is a clear difference between the UK and Austrian regarding the way in which the public can consult the (knowledge) basis on which newborn screening is designed. The Austrian accountability practice stands in the tradition of German “civic epistemology” where participation is sought during the law-making process. However, the significance of the law as a legitimatory basis for genetic medicine runs counter to the fact that NBS is not explicitly regulated by law in Austria and hasn’t been deliberated in the committees facilitating the law-making process.
Keywords:
Type: Registered lecture
Homepage: http://www.ifz.tugraz.at/index.php/article/articlereview/1550/1/80/
Event: International Symposium on Genetic Testing (Graz)
Date: 03.10.2008
lecture status:

Participants
Bernhard Wieser
Bernhard.Wieser@aau.at
Research activities
To visiting card
(internal)
  • Speaker

Assignment
Organisation Address
Fakultät für Sozialwissenschaften
  Institut für Technik- und Wissenschaftsforschung
B07b (LS) / Universitätsstraße 65-67
9020 Klagenfurt am Wörthersee
Austria
   andrea.lassnig@aau.at
https://www.aau.at/sts/
To organisation
B07b (LS) / Universitätsstraße 65-67
AT - 9020  Klagenfurt am Wörthersee

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Subject areas
  • 5912 - Social sciences (interdisciplinary)
Research Cluster No research Research Cluster selected
Focus of lecture
  • Science to Science (Quality indicator: n.a.)
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