Genomic research and wide data sharing: views of prospective participants.
Genomic research and wide data sharing: views of prospective participants.
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DOI：
10.1097/gim.0b013e3181e38f9e
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发表时间：
2010-08
期刊：
影响因子：
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通讯作者：
Burke W
中科院分区：
文献类型：
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作者：
Trinidad SB;Fullerton SM;Bares JM;Jarvik GP;Larson EB;Burke W
在研究社区内共享研究数据会在促进科学目标和保护研究参与者的隐私利益这两个重要利益之间产生紧张关系。本研究旨在探讨研究参与者和可能的未来参与者对全基因组关联研究（GWAS）和基于存储库的研究的看法、信念和态度。焦点小组会议(1)当前研究参与者，(2)替代决策者，(3)三个年龄定义的队列（18-34岁，35-50岁，50 - 50岁）。与会者对通过大型、可公开访问的数据存储库为研究目的广泛共享遗传和表型信息的可接受性表达了各种意见。大多数人认为，向研究界提供去识别的研究数据是一项应该追求的社会公益。隐私和保密问题很常见，尽管它们不一定会妨碍参与。许多与会者对与营利性组织共享数据持保留态度。信任是参与者对GWAS数据共享的核心看法。需要进一步的研究来开发制定管理价值的治理模型。
Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. The present study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies (GWAS) and repository-based research. Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18–34 years, 35–50, >50). Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, though they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. Trust is central in participants’ views regarding GWAS data sharing. Further research is needed to develop governance models that enact the values of stewardship.