Inter-University Research Centre for Technology, Work and Culture, Modern Biotechnology, Schloegelgasse 2, 8010 Graz, Austria.
Soc Sci Med. 2010 Mar;70(6):926-33. doi: 10.1016/j.socscimed.2009.12.001. Epub 2010 Jan 12.
A number of European countries have expanded their screening programme considerably during the last decade. Other countries have, however, not expanded their programme substantially. In this paper, I will compare UK and Austria, two countries representing two ends of the European spectrum. Focussing on the decision-making processes behind the design and expansion of newborn screening, I draw on Sheila Jasanoff's concept of "civic epistemology" (Jasanoff, S. (2005). Designs on Nature. Princeton and Oxford: Princeton University Press.) to investigate how the chosen countries provide information in order to give account for their respective screening policies. In particular, I analyse how key institutions in the UK and Austria use scientific expertise to explain and justify national screening programmes. For this purpose, I compare the material that is made available to the public, including policy documents, scientific studies, medical guidelines, legal regulation, advisory committee reports and public engagement exercises. It was found that the observed differences in the accountability practices are rooted in nationally traditional forms of policy making. However, whether or not these repertoires become indeed realised is a more contingent matter and is often triggered by events which evoke a response from the medical and policy-making actors.
在过去十年中，许多欧洲国家大幅扩大了他们的筛查计划。然而，其他国家并没有大幅扩大他们的计划。在本文中，我将比较英国和奥地利这两个代表欧洲两个极端的国家。我将重点关注新生儿筛查设计和扩展背后的决策过程，借鉴希拉·贾萨诺夫的“公民认识论”概念（Jasanoff，S.（2005）。自然设计。普林斯顿和牛津：普林斯顿大学出版社。），以调查所选择的国家如何提供信息以说明其各自的筛查政策。特别是，我分析了英国和奥地利的关键机构如何利用科学专业知识来解释和证明国家筛查计划的合理性。为此，我比较了向公众提供的材料，包括政策文件、科学研究、医疗指南、法律规定、咨询委员会报告和公众参与活动。结果发现，所观察到的问责实践差异源于国家传统的决策形式。然而，这些方案是否真正实现是一个更偶然的问题，通常是由引发医疗和政策制定者做出反应的事件引发的。
