Cystic fibrosis: to screen or not to screen? Involving a Citizens' jury in decisions on screening carrier
Cystic fibrosis: to screen or not to screen? Involving a Citizens' jury in decisions on screening carrier
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DOI：
10.1111/hex.12261
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发表时间：
2015-12-01
影响因子：
3.2
通讯作者：
Satolli, Roberto
中科院分区：
文献类型：
--
作者：
Mosconi, Paola;Castellani, Carlo;Satolli, Roberto
近年来，分子生物学技术的不断改进使得检测包括囊性纤维化（CF）在内的几种遗传疾病的携带者成为可能。在一些国家，向越来越多的普通人群提供CF携带者筛查。不应在不征求公民意愿的情况下，仅由地方卫生主管部门决定在人群层面提供带菌者筛查。让公民参与决策过程的一种方法可能是公民陪审团，这是一种协商民主的方法。目的：本研究的目的是使用公民陪审团对CF携带者筛查提出建议。由于这是该领域的一种新方法，本研究也为评估其有效性提供了机会。该项目由执行委员会设计和管理。整个过程由一个多学科科学委员会监督。评审团的16名成员参加为期1天的会议，由一名非医疗和无偏见的调解人协助。在陪审团会议前15天准备和分发信息材料；在会议期间，专家和证人通过问答与所有陪审员直接互动。结果除了一名评审团成员外，所有评审团成员都对卫生服务部门积极提供CF携带者筛查持积极态度。最终结论可供公众、临床医生、研究人员和决策者使用。总的来说，公民陪审团是一种让公民参与公共卫生决策过程的可行方法，特别是对于获得社区对CF携带者筛查的看法。
Context In recent years, the continuous improvements in molecular biology techniques have made it possible to detect carriers for several genetic conditions, including cystic fibrosis (CF). In some countries, CF carrier screening is offered to increasing subset of the general population. Offering of carrier screening at a population level should not be decided by local health authorities only, without consulting citizens' preferences. One way to involve citizens in the decision process might be to a Citizens' jury, a method of deliberative democracy.Objective The object of the study is to produce a recommendation statement about CF carrier screening using a Citizens' jury. As this is a new method in the field, the study also provided the opportunity to evaluate its effectiveness.Design The project is designed and managed by an executive committee. The whole process is superintended by a multidisciplinary scientific committee. The 16 members of the jury attend a 1 day meeting, assisted by a non-medical and unbiased facilitator. Informative material was prepared and distributed 15 days before the jury meeting; during the meeting, experts and witnesses interact directly with all the jurors through questions and answers.Results All except one member of the jury felt positively about the Health Service actively providing population carrier screening for CF. The final statement was available to public, clinicians, researchers and decision-makers.Discussion In general, a Citizens' jury is a feasible method for involving citizens in public health decision-making process and in particular for obtaining a community view about CF carrier screening.