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首页> 外文期刊>American journal of medical genetics, Part A >Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project.
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Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project.

机译：基于人群的DNA生物库的社区咨询和交流：马什菲尔德诊所个性化医学研究项目。

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The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population-based biobank. A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB. Ongoing communication with study subjects, who consent on the condition that personal genetic results will not be disclosed, takes place through a newsletter that is distributed twice yearly, community talks and media coverage. Most focus group participants were concerned about the confidentiality of both their medical and genetic data. Focus group discussions with eligible residents who elected not to participate in PMRP revealed that many knew very little about the project, but thought that too much information had been provided, leading them to believe that it would take too long for them to understand and enroll in the study. In conclusion, an engaged community advisory group can provide a sounding board to study investigators for many study issues and can provide guidance for broader communication activities. Researchers need to balance the provision of information for potential subjects to make informed decisions about study participation, with respect for individuals' time to read and interpret study materials.
机译：本文的目的是描述针对个性化医学研究项目（PMRP）（基于人口的生物库）的社区咨询和交流工作。在首次招募努力之前的一年中，与可能符合条件的社区居民进行了一系列的焦点小组讨论，而在首次招募之后的不到一年的时间内，与拒绝参与PMRP的合格居民进行了一系列的座谈会讨论。组成了一个社区咨询小组，该小组有19名成员，反映了符合条件的社区的人口统计资料，并且每年开会两次，以向PMRP首席调查员和当地IRB提供建议和反馈。与研究对象的持续交流是在不公开个人遗传结果的前提下达成的，通过每年两次分发的新闻通讯，社区讲座和媒体报道进行。大多数焦点小组参与者担心其医学和遗传数据的机密性。与选择不参加PMRP的合格居民进行的焦点小组讨论表明，许多人对该项目知之甚少，但认为已经提供了太多信息，使他们相信，他们理解和注册该过程将花费太长时间。研究。总之，一个参与社区咨询小组可以为研究人员提供许多研究问题的咨询委员会，并可以为更广泛的交流活动提供指导。研究人员需要权衡潜在受试者的信息提供，以便就个人参与阅读和解释研究材料的时间做出明智的研究参与决策。

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