Informed consent in biobank research: A deliberative approach to the debate
Informed consent in biobank research: A deliberative approach to the debate
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DOI：
10.1016/j.socscimed.2008.11.020
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发表时间：
2009-02-01
影响因子：
5.4
通讯作者：
Burgess, Michael M.
中科院分区：
文献类型：
--
作者：
Secko, David M.;Preto, Nina;Burgess, Michael M.
正如文献中所承认的那样，与生物库有关的公众咨询在很大程度上是为了保证和提供信息，而不是寻求经过深思熟虑的投入。2007年4月和5月，作者参加了在加拿大不列颠哥伦比亚省举行的一次审议性公众参与活动，该活动旨在加强与生物库治理有关的公众投入。该活动的主题是“生物库在不列颠哥伦比亚省（BC）”，在该活动中，随机数字拨号人口统计分层样本的21名参与者审议了什么价值观和利益应该被考虑在监管和使用生物库的健康研究。在本文中，我们报告的结果有关的辩论知情同意在生物库研究的地方。利用前/后的调查和定性分析的事件成绩单，我们表明，参与者表示强烈支持生物库，为普遍减少关注撤回样本，并把重点放在审查生物库的研究，是独立的资助者和研究人员的需要。在这方面，对于新的研究活动何时需要征得同意一直存在分歧。(C)2008爱思唯尔有限公司保留所有权利。
As acknowledged in the literature, public consultation related to biobanks has been largely oriented to assuring and informing rather than seeking considered input. In April and May of 2007, the authors participated in running a deliberative public engagement event in British Columbia, Canada, which sought to enhance public input related to the governance of biobanks. The topic of the event was 'Biobanking in British Columbia (BC)' and at the event a random-digit dialed demographically stratified sample of 21 participants deliberated on what values and interests ought to be considered in the regulation and use of biobanks for health research. In this paper, we report results related to debate over the place of informed consent in biobank research. Drawing on a pre/post-survey and qualitative analysis of event transcripts, we show that participants indicated strong support for biobanks, for a general reduction in concern for withdrawal of samples, and placed a strong emphasis on the need for review of biobanks research that is independent of funders and researchers. In this context, there was persistent disagreement about when consent was required for new research activities. (C) 2008 Elsevier Ltd. All rights reserved.