The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.

The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.
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DOI:
10.1007/s10739-018-9538-7
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发表时间:
2018-12
影响因子:
0.8
通讯作者:
Cook-Deegan R
Cook-Deegan R
中科院分区:
人文科学2区
文献类型:
--
作者:
Maxson Jones K;Ankeny RA;Cook-Deegan R

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DNA序列数据共享的百慕大原则是人类基因组计划(HGP)的持久遗产。它们于1996年2月在百慕大举行的战略会议上被人类基因组计划通过,并于1998年初在正式政策中实施,要求每天向公共领域发布由人类基因组计划资助的DNA序列。我们认为,每日共享的想法直接源于大型、目标导向的分子生物学项目的战略,这些项目首先在线虫研究人员的“社区”中进行了测试,并由线虫生物学家约翰·苏斯顿和罗伯特·沃特斯顿介绍并为HGP辩护。在线虫社区中,以及随后在HGP中,日常共享服务于质量控制和项目协调的务实目标。然而,我们也认为,在HGP人类基因组中,百慕大原则解决了人们对基因专利阻碍科学进步的担忧,并在实施和理由方面具有雄心壮志和灵活性。它们是如何快速实现数据共享和使之合理化的典范,并允许适应不同科学界的需要。然而,除了苏斯顿和沃特斯顿的支持外,它们的采用还取决于美国国立卫生研究院(NIH)和英国非营利性慈善机构惠康信托(Wellcome Trust)的管理人员的影响力,这两家机构总共资助了HGP人类测序工作的90%。希望留在HGP联合体中的其他国家必须适应百慕大原则,要求德国、日本和法国的公共资助研究的现有或悬而未决的数据访问政策例外。这个故事始于1963年,生物学家西德尼·布伦纳提议在剑桥大学分子生物学实验室(LMB)开展线虫研究项目。我们继续到2003年,随着HGP人类参考基因组的完成,并结束了对政策和分子生物学历史学的观察。
The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project (HGP). They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced and defended for the HGP by the nematode biologists John Sulston and Robert Waterston. In the C. elegans community, and subsequently in the HGP, daily sharing served the pragmatic goals of quality control and project coordination. Yet in the HGP human genome, we also argue, the Bermuda Principles addressed concerns about gene patents impeding scientific advancement, and were aspirational and flexible in implementation and justification. They endured as an archetype for how rapid data sharing could be realized and rationalized, and permitted adaptation to the needs of various scientific communities. Yet in addition to the support of Sulston and Waterston, their adoption also depended on the clout of administrators at the US National Institutes of Health (NIH) and the UK nonprofit charity the Wellcome Trust, which together funded 90% of the HGP human sequencing effort. The other nations wishing to remain in the HGP consortium had to accommodate to the Bermuda Principles, requiring exceptions from incompatible existing or pending data access policies for publicly funded research in Germany, Japan, and France. We begin this story in 1963, with the biologist Sydney Brenner’s proposal for a nematode research program at the Laboratory of Molecular Biology (LMB) at the University of Cambridge. We continue through 2003, with the completion of the HGP human reference genome, and conclude with observations about policy and the historiography of molecular biology.
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发表时间: 1993-07-01
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发表时间: 1992-02-13
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