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一种将公民对生物样本库的审慎观点进行政策转化的澳大利亚式方法。

An Australian approach to the policy translation of deliberated citizen perspectives on biobanking.

作者信息

Molster Caron, Maxwell Susannah, Youngs Leanne, Potts Ayla, Kyne Gaenor, Hope Fiona, Dawkins Hugh, O'Leary Peter

机构信息

Office of Population Health Genomics, Department of Health, Curtin University of Technology, Perth, WA, Australia.

出版信息

Public Health Genomics. 2012;15(2):82-91. doi: 10.1159/000334104. Epub 2011 Dec 14.

Abstract

BACKGROUND

Deliberative public engagement is recommended for policy development in contested ethical areas. Scholars provide little guidance on how deliberative outputs can be translated to policy. This paper describes the processes we undertook to design a deliberative public forum for citizens to develop recommendations on biobanking that were adopted as health policy.

METHOD

The 4-day forum, held in 2008 in Perth, Western Australia, was designed in collaboration with academic experts. Deliberant recommendations were recorded in a formal report presented to policy-makers. Deliberations were audio-taped and transcribed. Translation involved transcript analyses, comparison of recommendations to other stakeholder views and post-forum consultations.

RESULTS

Sixteen citizens made recommendations on ethical, legal and social issues related to biobanking. Most recommendations were translated into biobanking guidelines, with which Western Australia government health agencies must comply. The value of deliberative public participation in policy-making was most evident when trade-offs in competing interests, hopes and concerns were required. Translation issues included the impact of a small number of participants with limited socio-demographic diversity on procedural and policy legitimacy.

CONCLUSIONS

Assessing the sufficiency of diversity in citizen representation was central to the deliberation-to-translation process. Institutional context facilitated the uptake of deliberation and translation processes. The use of these processes influenced policy substance and credibility among stakeholders and contributed to the state government directive that policy compliance be mandatory. We urge others to publish deliberation-to-translation processes so that best-practices may be identified.

摘要

背景

在存在争议的伦理领域,建议通过协商性公众参与来制定政策。学者们对于如何将协商成果转化为政策几乎没有提供指导。本文描述了我们为设计一个协商性公众论坛所采取的过程,该论坛旨在让公民就生物样本库提出建议,这些建议已被采纳为卫生政策。

方法

2008年在西澳大利亚州珀斯举行的为期4天的论坛是与学术专家合作设计的。协商性建议记录在提交给政策制定者的正式报告中。协商过程进行了录音和转录。翻译工作包括对转录文本的分析、将建议与其他利益相关者的观点进行比较以及论坛后的磋商。

结果

16名公民就与生物样本库相关的伦理、法律和社会问题提出了建议。大多数建议被转化为生物样本库指南,西澳大利亚州政府卫生机构必须遵守这些指南。当需要在相互竞争的利益、希望和关切之间进行权衡时,协商性公众参与决策的价值最为明显。翻译问题包括少数社会人口统计学多样性有限的参与者对程序和政策合法性的影响。

结论

评估公民代表性中多样性的充分性是从协商到转化过程的核心。制度背景促进了协商和转化过程的采用。这些过程的使用影响了政策内容以及利益相关者之间的可信度,并促成了州政府关于强制政策合规的指令。我们敦促其他人公布从协商到转化的过程,以便能够确定最佳实践。

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