'Biobanks' "engagements": engendering trust or engineering consent?'
'Biobanks' "engagements": engendering trust or engineering consent?'
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DOI：
10.1186/1746-5354-3-1-31
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发表时间：
2007-04-15
期刊：
影响因子：
--
通讯作者：
Petersen A
中科院分区：
文献类型：
--
作者：
Petersen A
国际生物样本库的快速发展反映了人们对遗传学知识开发的巨大期望。然而，为新一代生物样本库建立同意和合法性并非没有挑战，因为它们本质上往往是前瞻性的，涉及收集 DNA、个人医疗和生活方式数据，这些数据通常出于未指定的研究目的而保存很长一段时间。到目前为止，生物样本库往往是在对其广泛影响进行广泛辩论之前建立的。本文具体参考了英国生物银行在建立阶段所采用的“参与”流程，重点关注“公众参与”的政治。它考察了“公众参与”论点的背景，提请人们注意生物库项目中“参与”的特定方法如何限制对其开发过程中产生的实质性问题的辩论。有人认为，除非生物库的“参与”实质上让公众参与对其发展的审议，否则公众可能会对项目产生不信任，并可能在未来抵制其他类似的基于人口的健康举措。
The rapid development of biobanks internationally reflects the considerable expectations attached to the exploitation of genetics knowledge. However, establishing consent and legitimacy for the new generation of biobanks is not without its challenges because they tend to be prospective in nature, involving the collection of DNA, personal medical and lifestyle data generally held over a very long period of time for unspecified research purposes. Thus far, biobanks have tended to be established ahead of wide-ranging debate about their broad implications. Making specific reference to the 'engagement' processes employed by UK Biobank during its establishment phase, this article focuses on the politics of 'public engagement'. It examines the context of arguments for 'public engagement', drawing attention to how particular approaches to 'engagement' within biobank projects may serve to limit debate on substantive questions arising from their development. Unless biobanks' 'engagements' substantially involve publics in deliberations about their development, it is argued, publics are likely to become distrustful of projects and perhaps resist other similar population-based health initiatives in the future.