Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking.

Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking.
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DOI:
10.3325/cmj.2012.53.390
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发表时间:
2012-08
影响因子:
1.9
通讯作者:
Cornel MC
Cornel MC
中科院分区:
医学4区
文献类型:
--
作者:
Douglas CM;van El CG;Faulkner A;Cornel MC

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目前,围绕干血斑(DBS)的多种用途和多用户进行研究的一系列治理问题。国际上正在讨论如何储存新生儿筛查产生的脑起搏图,以供公共卫生使用,并将其作为大型生物库的基础,以促进生物医学研究。如果这样的转变是形式化的,那么DBS将位于护理(即公共卫生)和研究的交叉点,通过这种收集来管理的机制并非完全不言而喻。此外,星展银行的藏品引发了关于隐私和匿名之间模糊界限的问题;如何控制或定义DBS的质量控制用途;医疗与非医疗用途;以及利益分享和利益相关者参与。我们的目标是通过生物客体和生物物化概念来探讨与星展银行治理有关的一些关键问题。通过拥抱——而不是抵制——界限的模糊和分类中的问题,这些问题已经成为生物物体和生物物化过程的特征,我们试图强调一些目前可能没有被考虑的问题,并指出一些可能的方向去(或避免)。根据我们对荷兰星展银行现状的了解,我们概述了有关星展银行的使用、管理、收集和存储的问题。
A series of governance issues currently surrounds the multiple uses and multiple users of dried blood spots (DBS) for research purposes. Internationally there is a discussion on storing DBS resulting from newborn screening for public health and using them as the basis for large biobank-like collections to facilitate biomedical research. If such a transformation were to be formalized, then DBS would sit at the intersection of care (ie, public health) and research, with the mechanisms through which such a collection could be managed not totally self-evident. What is more, a DBS collection raises questions about the fuzzy boundaries between privacy and anonymity; how to control or define quality control uses of DBS; medical vs nonmedical uses; as well as benefit sharing and stakeholder involvement. Our goal here is to explore some of the key questions relating to DBS governance by way of the bio-objects and bio-objectification concepts. By embracing – rather than resisting to – the blurring of boundaries and problems in categorization that have come to characterize bio-objects and bio-objectification processes recently described in this journal, we attempt to highlight some issues that might not be currently considered, and to point to some possible directions to go (or avoid). Building from our knowledge of the current DBS situation in the Netherlands, we outline questions concerning the uses, management, collection, and storage of DBS.
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