Community dissemination and genetic research: moving beyond results reporting.
Community dissemination and genetic research: moving beyond results reporting.
复制标题
社区传播和基因研究：超越结果报告。
DOI：
10.1002/ajmg.a.37028
复制
发表时间：
2015
期刊：
影响因子：
--
通讯作者：
Burke,Wylie
中科院分区：
文献类型：
--
作者：
Trinidad,SusanBrown;Ludman,EvetteJ;Hopkins,Scarlett;James,RosalinaD;Hoeft,TheresaJ;Kinegak,Annie;Lupie,Henry;Kinegak,Ralph;Boyer,BertB;Burke,Wylie
基于社区的参与式研究（CBPR）文献指出，研究人员应该与社区分享研究结果。在人类基因研究的案例中，结果可能在科学上很有趣，但缺乏临床相关性。这项研究的目的是了解社区成员想要接收什么样的关于基因研究的信息，以及这些信息应该如何传达。我们与阿拉斯加西南部的Yup'ik阿拉斯加原住民（N = 60）进行了8次焦点小组讨论，与华盛顿州西雅图的一家大型健康维护组织的成员进行了6次焦点小组讨论（N = 61）。参与者希望获得他们“可以做些什么”的遗传信息，并希望与他们的医疗保健提供者分享临床可操作的信息；他们还希望研究人员分享对社区重要的其他主题的知识。虽然阿拉斯加土著参与者通常不太熟悉西方科学术语，对基于网络的信息来源不太感兴趣，但阿拉斯加和西雅图的主要发现是相同的：参与者希望进行持续的对话，包括非正式的、小组对话的机会，并接受与当地相关的信息。有效的社区传播不仅仅是用外行语言呈现研究结果。社区成员应参与确定文化上适当的传播策略，并确定应分享哪些信息。将传播重新定义为双向对话，而不是单向传播，可以支持推进科学知识和实现社区利益的双重目标。©2015 Wiley期刊公司
The community‐based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted eight focus group discussions with Yup'ik Alaska Native people in southwest Alaska (N = 60) and 6 (N = 61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they “could do something about” and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web‐based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small‐group conversations, and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two‐way dialogue, rather than a one‐way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit. © 2015 Wiley Periodicals, Inc.