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Biobanks engagements: engendering trust or engineering consent?

机译:生物库的参与:产生信任还是工程同意?

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摘要

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.
机译:国际上生物库的迅速发展反映了人们对遗传学知识的开发抱有很高的期望。但是,为新一代生物库建立同意和合法性并非没有挑战,因为它们往往具有前瞻性,涉及DNA,个人医疗和生活方式数据的收集,这些数据通常在很长一段时间内保存,用于未指定的研究目的。迄今为止,倾向于在关于其广泛影响的广泛辩论之前建立生物库。本文专门参考了英国生物银行在建立阶段所采用的“参与”流程,重点研究了“公众参与”的政治。它研究了“公众参与”的论点,提请人们注意生物银行项目中“参与”的特殊方法如何限制关于其发展所产生的实质性问题的辩论。有人认为,除非生物银行的“参与”在很大程度上使公众参与其发展的讨论,否则公众很可能对项目不信任,并且将来可能会抵制其他类似的基于人群的卫生计划。

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