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Scientific Citizenship’s Youngest Domain: Function Creep in Norway’s Newborn Screening Programme
Science, Technology and Society ( IF 1.7 ) Pub Date : 2021-03-04 , DOI: 10.1177/0971721820964891
Sarah B. Evans-Jordan 1 , John-Arne Skolbekken 2
Affiliation  

Newborn screening (NBS) for inborn errors of metabolism and other serious conditions with onset during infancy is a widespread public health initiative. Like other screening programmes, it aims to discover and treat a disease before effects manifest themselves. Recently, there have been two prominent changes in NBS: a substantial increase in the number of conditions screened for and growing attention to secondary use of residual newborn blood spots. Here, we analyse how this latter change has transpired in Norway.

In 2018, Norway’s parliament sanctioned the secondary use of NBS samples for epidemiological research unrelated to NBS. This broadened the programme’s scope, co-opting it for research purposes, making samples available for inclusion in Norway’s biobanking strategy. We argue that this transformation is a case of function creep, whereby the function of screening samples is expanded to serve purposes other than helping newborns. The process provided only minimal involvement from ordinary citizens, but it transformed screened infants into potential scientific citizens. Henceforth, all future generations of Norwegians must choose to stay in or opt out of biobank research when they turn sixteen. Additionally, consenting to this research may occasion a second form of function creep, as ‘actionable findings’ are fed back to participants.



中文翻译:

科学公民最年轻的领域:挪威新生儿筛查计划中的功能蠕变

新生儿筛查(NBS)是婴儿期发病的先天性代谢错误和其他严重疾病,是一项广泛的公共卫生计划。与其他筛查程序一样,它旨在在疾病显现之前发现并治疗疾病。最近,国家统计局发生了两个突出的变化:筛查的疾病数量大量增加,以及对残留新生儿血斑的二次使用的关注日益增加。在这里,我们分析了后一种变化如何在挪威发生。

2018年,挪威议会批准将国家统计局样本用于与国家统计局无关的流行病学研究。这扩大了该计划的范围,为研究目的选择了该计划,使样本可供纳入挪威的生物银行战略。我们认为,这种转变是功能蠕变的一种情况,由此筛选样本的功能扩展到了除帮助新生儿以外的其他目的。该过程仅使普通公民的参与减少到最低限度,但它使受筛查的婴儿变成了潜在的科学公民。从今以后,所有后代的挪威人都必须在16岁时选择留在或选择退出生物库研究。此外,同意这项研究可能会引起功能蠕变的第二种形式,因为“可行的发现”会反馈给参与者。

更新日期:2021-03-04
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