Harvard Personal Genome Project: lessons from participatory public research.
Harvard Personal Genome Project: lessons from participatory public research.
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DOI：
10.1186/gm527
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发表时间：
2014-02-28
期刊：
影响因子：
12.3
通讯作者：
Church GM
中科院分区：
文献类型：
--
作者：
Ball MP;Bobe JR;Chou MF;Clegg T;Estep PW;Lunshof JE;Vandewege W;Zaranek A;Church GM
自 2005 年启动以来，哈佛个人基因组计划已招募了数千名有兴趣公开分享其基因组、健康和性状数据的志愿者。由于这些数据具有高度可识别性，因此我们使用“开放同意”框架，有意排除有关隐私的承诺，并要求参与者在注册前表现出理解能力。我们的非匿名公共基因组模型使我们建立了研究人员与参与者之间的交流和互动的高度参与性模型。参与者是高度忠诚的志愿者，自我追求并捐赠与研究相关的数据集，并积极参与与我们的员工和其他个人基因组项目参与者的对话。我们对这些交流和捐赠进行了定量评估，并报告了我们向参与者返回研究级全基因组数据的经验。我们还观察了与我们的项目相关的一些社区发展和讨论。我们发现公共非匿名数据很有价值，并且可以形成参与性研究模型，我们鼓励其他人考虑这种模型。基于网络的工具和方法以及参与者教育极大地促进了该模型的实施。项目的结果是参与者的长期积极参与和社区的发展，使研究人员和参与者都受益。
Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an ‘open consent’ framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants.
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DOI：
10.1038/gim.2013.73
发表时间：
2013-07
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
30.8
作者：
Schadt, Eric E.;Woo, Sangsoon;Hao, Ke
通讯作者：
Hao, Ke
影响因子：
56.9
作者：
Gymrek, Melissa;McGuire, Amy L.;Erlich, Yaniv
通讯作者：
Erlich, Yaniv
DOI：
10.1073/pnas.1201904109
发表时间：
2012-07-24
影响因子：
11.1
作者：
Ball, Madeleine P.;Thakuria, Joseph V.;Church, George M.
通讯作者：
Church, George M.
影响因子：
4.5
作者：
Homer N;Szelinger S;Redman M;Duggan D;Tembe W;Muehling J;Pearson JV;Stephan DA;Nelson SF;Craig DW
通讯作者：
Craig DW