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Genomics, society, and policy最新文献

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Making humans better and making better humans 让人类变得更好，让人类变得更好
Genomics, society, and policy
Pub Date : 2010-04-15 DOI: 10.1186/1746-5354-6-1-1
M. Levitt, F. O'Neill
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引用次数: 1
A Response to Christopher Hood: 'The ethics of personal genetic profiling' 对克里斯托弗·胡德的回应:“个人基因图谱的伦理”
Genomics, society, and policy
Pub Date : 2010-04-15 DOI: 10.1186/1746-5354-6-1-66
R. Tutton, A. Hedgecoe
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引用次数: 0
Data Protection and Sample Management in Biobanking - A legal dichotomy 生物银行的数据保护和样本管理——法律上的二分法
Genomics, society, and policy
Pub Date : 2010-04-15 DOI: 10.1186/1746-5354-6-1-33
Tobias Schulte in den Bäumen, D. Paci, D. Ibarreta
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引用次数: 13
Bionetworking over DNA and biosocial interfaces: Connecting policy and design DNA和生物社会界面上的生物网络:连接政策和设计
Genomics, society, and policy
Pub Date : 2010-04-15 DOI: 10.1186/1746-5354-6-1-47
D. Kera
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引用次数: 6
The ethics of personal genetic profiling 个人基因分析的伦理
Genomics, society, and policy
Pub Date : 2010-04-15 DOI: 10.1186/1746-5354-6-1-61
C. Hood
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引用次数: 0
Community engagement in biobanking: Experiences from the eMERGE Network. 生物银行的社区参与:来自eMERGE网络的经验。
Genomics, society, and policy
Pub Date : 2010-01-01 DOI: 10.1186/1746-5354-6-3-50
Amy A Lemke, Joel T Wu, Carol Waudby, Jill Pulley, Carol P Somkin, Susan Brown Trinidad

Advances in genomic technologies and the promise of "personalised medicine" have spurred the interest of researchers, healthcare systems, and the general public. However, the success of population-based genetic studies depends on the willingness of large numbers of individuals and diverse communities to grant researchers access to detailed medical and genetic information. Certain features of this kind of research - such as the establishment of biobanks and prospective data collection from participants' electronic medical records - make the potential risks and benefits to participants difficult to specify in advance. Therefore, community input into biobank processes is essential. In this report, we describe community engagement efforts undertaken by six United States biobanks, various outcomes from these engagements, and lessons learned. Our aim is to provide useful insights and potential strategies for the various disciplines that work with communities involved in biobank-based genomic research.

基因组技术的进步和“个性化医疗”的前景激发了研究人员、医疗保健系统和公众的兴趣。然而，基于群体的遗传研究的成功取决于大量个人和不同社区是否愿意让研究人员获得详细的医学和遗传信息。这类研究的某些特点——例如建立生物银行和从参与者的电子医疗记录中收集前瞻性数据——使得参与者的潜在风险和利益难以事先确定。因此，社区对生物库过程的投入至关重要。在本报告中，我们描述了美国六个生物库开展的社区参与工作，这些参与的各种成果以及吸取的经验教训。我们的目标是为参与基于生物库的基因组研究的各个学科提供有用的见解和潜在的策略。
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引用次数: 52
Dynamic feelings about metaphors for genes: Implications for research and genetic policy 关于基因隐喻的动态感受:对研究和遗传政策的影响
Genomics, society, and policy
Pub Date : 2009-12-01 DOI: 10.1186/1746-5354-5-3-44
C. Condit
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引用次数: 7
Heroes of agricultural innovation 农业创新英雄
Genomics, society, and policy
Pub Date : 2009-12-01 DOI: 10.1186/1746-5354-5-3-59
C. van der Weele, J. Keulartz
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引用次数: 0
The Ethics of Public Health volumes I and II Michael Freeman (ed.) Ashgate Publishing Limited, 2010 公共卫生的伦理卷一和二迈克尔·弗里曼(编)阿什盖特出版有限公司，2010年
Genomics, society, and policy
Pub Date : 2009-12-01 DOI: 10.1186/1746-5354-5-3-77
Tom Walker
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引用次数: 0
Patenting Lives. Life Patents, Culture and Development Gibson, J. (ed.) Hampshire: Ashgate 专利的生活。生命专利，文化和发展吉布森，J.(编)汉普郡:阿什盖特
Genomics, society, and policy
Pub Date : 2009-12-01 DOI: 10.1186/1746-5354-5-3-74
M. Korthals
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引用次数: 0
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