Community Consultation and Communication for a Population-Based DNA Biobank: The Marshfield Clinic Personalized Medicine Research Project
Community Consultation and Communication for a Population-Based DNA Biobank: The Marshfield Clinic Personalized Medicine Research Project
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DOI：
10.1002/ajmg.a.32559
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发表时间：
2008-12-01
影响因子：
2
通讯作者：
Fost, Norman
中科院分区：
文献类型：
--
作者：
McCarty, Catherine A.;Chapman-Stone, Donna;Fost, Norman
本文的目的是描述个性化医学研究项目（PMRP）的社区咨询和沟通工作，这是一个基于人群的生物库。在最初招募工作的前一年与可能符合条件的社区居民进行了一系列焦点小组讨论，在最初招募工作后不到一年的时间里，与拒绝参加PMRP的符合条件的居民进行了讨论。成立了一个社区咨询小组，由19名成员组成，反映了符合条件的社区的人口统计数据，每年召开两次会议，向PMRP首席研究员和当地IRB提供建议和反馈。通过每年两次的通讯、社区谈话和媒体报道与研究对象进行持续沟通，研究对象同意的条件是，研究对象同意个人基因结果不会被披露。大多数焦点小组参与者对其医疗和遗传数据的保密性表示关切。与选择不参加PMRP的合格居民进行的焦点小组讨论显示，许多人对该项目知之甚少，但认为提供的信息太多，导致他们认为他们需要很长时间才能理解并参加该研究。总之，一个参与的社区咨询小组可以为许多研究问题的研究人员提供一个声音板，并为更广泛的交流活动提供指导。研究人员需要平衡为潜在受试者提供的信息，以便他们做出参与研究的明智决定，同时尊重个人阅读和解释研究材料的时间。(C) 2008 Wiley-Liss, Inc。
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 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 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. (C) 2008 Wiley-Liss, Inc.