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Community recommendations on biobank governance: Results from a deliberative community engagement in California

机译：社区对生物库治理的建议：加利福尼亚州社区协商的结果

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United States-based biorepositories are on the cusp of substantial change in regulatory oversight at the same time that they are increasingly including samples and data from large populations, e.g. all patients in healthcare system. It is appropriate to engage stakeholders from these populations in new governance arrangements. We sought to describe community recommendations for biorepository governance and oversight using deliberative community engagement (DCE), a qualitative research method designed to elicit lay perspectives on complex technical issues. We asked for stakeholders to provide input on governance of large biorepositories at the University of California (UC), a public university. We defined state residents as stakeholders and recruited residents from two large metropolitan areas, Los Angeles (LA) and San Francisco (SF). In LA, we recruited English and Spanish speakers; in SF the DCE was conducted in English only. We recruited individuals who had completed the 2009 California Health Interview Survey and were willing to be re-contacted for future studies. Using stratified random sampling (by age, education, race/ethnicity), we contacted 162 potential deliberants of whom 53 agreed to participate and 51 completed the 4-day DCE in June (LA) and September-October (SF), 2013. Each DCE included discussion among deliberants facilitated by a trained staff and simultaneously-translated in LA. Deliberants also received a briefing book describing biorepository operations and regulation. During the final day of the DCE, deliberants voted on governance and oversight recommendations using an audience response system. This paper describes 23 recommendations (of 57 total) that address issues including: educating the public, sharing samples broadly, monitoring researcher behavior, using informative consent procedures, and involving community members in a transparent process of biobank governance. This project demonstrates the feasibility of obtaining meaningful input on biorepository governance from diverse lay stakeholders. Such input should be considered as research institutions respond to changes in biorepository regulation.
机译：总部位于美国的生物储存库正处于监管监督的重大变革的风口浪尖上，与此同时，它们也越来越多地包含了来自大量人口（例如美国）的样本和数据。医疗系统中的所有患者。让这些人群的利益相关者参与新的治理安排是适当的。我们试图使用协商性社区参与（DCE）描述针对生物资源库治理和监督的社区建议，这是一种定性研究方法，旨在引起人们对复杂技术问题的看法。我们要求利益相关者在公立大学加利福尼亚大学（UC）提供有关大型生物资源库治理的意见。我们将州居民定义为利益相关者，并从洛杉矶（LA）和旧金山（SF）这两个大都市地区招募了居民。在洛杉矶，我们招募了讲英语和西班牙语的人；在旧金山，DCE仅以英语进行。我们招募了已完成2009年加州健康面试调查并愿意再次联系以进行进一步研究的人员。通过分层随机抽样（按年龄，文化程度，种族/民族），我们联系了162个潜在的议事人，其中53个同意参加，并且51个人在2013年6月（LA）和9月-10月（SF）完成了为期4天的DCE。 DCE包括在受过培训的人员的协助下在洛杉矶进行翻译的讨论人员之间的讨论。讨论者还收到了一本介绍生物储存库操作和法规的简报。在DCE的最后一天，讨论者使用受众响应系统对治理和监督建议进行了投票。本文介绍了23项建议（共57项建议），这些建议涉及以下问题：公众教育，广泛共享样本，监测研究人员的行为，使用知情同意程序以及使社区成员参与生物银行治理的透明过程。该项目证明了从各行各业的利益相关者那里获得有意义的生物资源库管理投入的可行性。当研究机构对生物存储库法规的变化做出反应时，应考虑这种投入。

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