Community engagement about genetic variation research.
Community engagement about genetic variation research.
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DOI：
10.1089/pop.2011.0013
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发表时间：
2012-04
影响因子：
2.5
通讯作者：
S. Terry;K. Christensen;Susan Metosky;G. Rudofsky;K. Deignan;Hulda Martinez;Penelope Johnson-Moore;T. Citrin
中科院分区：
文献类型：
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作者：
S. Terry;K. Christensen;Susan Metosky;G. Rudofsky;K. Deignan;Hulda Martinez;Penelope Johnson-Moore;T. Citrin
本文的目的是描述的方法和有效性的公众参与遗传变异和单倍型作图问题（PEGV）项目，该项目参与了一个社区的遗传变异研究的政策讨论。该项目在纽约的新罗谢尔实施了一个6阶段社区参与模式。首先，研究人员招募了社区合作伙伴。其次，项目团队创建了社区监督。第三，焦点小组讨论了遗传变异研究产生的问题。第四，社区对话会议讨论了重点小组的调查结果，并提出了政策建议。第五，举行了一次会议，提出这些政策建议，并为HapMap（单倍型图谱）研究人员提供一个论坛，与居民直接对话。最后，通过介绍和论文向与会者和更广泛的社区传播了调查结果。该项目产生了一个遗传变异研究的拟议指南清单，解决了新罗谢尔居民的关切。项目小组成员对参与模式总体上表示满意，但对社区团体的利用情况以及社区的哪些部分实际参与项目表示关切。PEGV项目是研究人员让公众参与遗传研究政策制定的一个模式。这样一个过程的好处超出了期望的遗传研究。
The aim of this article is to describe the methods and effectiveness of the Public Engagement in Genetic Variation and Haplotype Mapping Issues (PEGV) Project, which engaged a community in policy discussion about genetic variation research. The project implemented a 6-stage community engagement model in New Rochelle, New York. First, researchers recruited community partners. Second, the project team created community oversight. Third, focus groups discussed concerns generated by genetic variation research. Fourth, community dialogue sessions addressed focus group findings and developed policy recommendations. Fifth, a conference was held to present these policy recommendations and to provide a forum for HapMap (haplotype mapping) researchers to dialogue directly with residents. Finally, findings were disseminated via presentations and papers to the participants and to the wider community beyond. The project generated a list of proposed guidelines for genetic variation research that addressed the concerns of New Rochelle residents. Project team members expressed satisfaction with the engagement model overall but expressed concerns about how well community groups were utilized and what segment of the community actually engaged in the project. The PEGV Project represents a model for researchers to engage the general public in policy development about genetic research. There are benefits of such a process beyond the desired genetic research.