O'Doherty K C, Burgess M M
University of British Columbia, The W. Maurice Young Centre for Applied Ethics, Vancouver, B.C., Canada.
Public Health Genomics. 2009;12(4):203-15. doi: 10.1159/000167801. Epub 2008 Oct 31.
In April 2007, a research team led by M. Burgess conducted a public engagement, the BC Biobank Deliberation, focused on the issue of biobanks. The project was motivated by an observation that current policy approaches to social and ethical issues surrounding biobanks manifest certain democratic deficits. The public engagement was informed by political theory on deliberative democracy with the aim of informing biobanking policies, in particular in British Columbia (BC), Canada. The purpose of this paper is to provide a comprehensive outline of the conclusions reached by the deliberants (both recommendations based on consensus and issues that emerged as persistent disagreements). However, the process whereby the specific conclusions to be delivered to policy makers are identified is not a self-evident process. We thus provide a critical analysis of how the results of a public engagement such as the BC Biobank Deliberation can be conceptualized given the context of a large qualitative data set and an imperative to provide useful information to policy makers, while honoring the mandate under which deliberants were recruited. In particular, we make the case for distinguishing between deliberative outputs of public engagement and analytical outputs that are the product of social scientific analyses of such engagements.
2007年4月,由M. 伯吉斯领导的一个研究团队开展了一次公众参与活动,即不列颠哥伦比亚生物样本库审议,重点关注生物样本库问题。该项目的起因是观察到当前针对生物样本库相关社会和伦理问题的政策方法存在某些民主缺陷。此次公众参与活动参考了协商民主的政治理论,目的是为生物样本库政策提供信息,特别是在加拿大不列颠哥伦比亚省(BC省)。本文的目的是全面概述审议者得出的结论(包括基于共识的建议以及作为持续分歧出现的问题)。然而,确定要传达给政策制定者的具体结论的过程并非一目了然。因此,鉴于存在大量定性数据集的背景以及向政策制定者提供有用信息的紧迫性,同时尊重招募审议者时所赋予的任务,我们对如何将诸如不列颠哥伦比亚生物样本库审议这样的公众参与结果概念化进行了批判性分析。特别是,我们主张区分公众参与的审议产出和作为对此类参与的社会科学分析产物的分析产出。