Engaging the Public on Biobanks: Outcomes of the BC Biobank Deliberation

被引:87
作者
O'Doherty, K. C. [1 ]
Burgess, M. M. [1 ]
机构
[1] Univ British Columbia, W Maurice Young Ctr Appl Eth, Vancouver, BC V6T 1Z2, Canada
关键词
Biobanks; Deliberative democracy; Deliberative output; Governance; Health research; Informed consent; Privacy; Public engagement; ENGAGEMENT; COMMUNITY; CONSENSUS; TRUST;
D O I
10.1159/000167801
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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. Copyright (C) 2008 S. Karger AG, Basel
引用
收藏
页码:203 / 215
页数:13
相关论文
共 37 条
[1]   Hearing community voices: public engagement in Australian human embryo research policy, 2005-2007 [J].
Ankenya, Rachel A. ;
Dodds, Susan .
NEW GENETICS AND SOCIETY, 2008, 27 (03) :217-232
[2]  
[Anonymous], B SCI TECHNOLOGY SOC
[3]  
[Anonymous], Between Facts and Norms
[4]  
Contributions to a Discourse Theory of Law and Democracy
[5]  
[Anonymous], 2007, GENOMICS SOC POLICY
[6]  
[Anonymous], CRITICAL PUBLIC HLTH, DOI DOI 10.1080/09581590500523202
[7]  
[Anonymous], 2005, DELIBERATIVE DEMOCRA
[8]  
[Anonymous], 2006, J BIOETHIC INQ, DOI DOI 10.1007/S11673-006-9007-4
[9]   LADDER OF CITIZEN PARTICIPATION [J].
ARNSTEIN, SR .
JOURNAL OF THE AMERICAN INSTITUTE OF PLANNERS, 1969, 35 (04) :216-224
[10]  
AVARD D, J PUBLIC DE IN PRESS