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

Maxson Jones K1,2, Ankeny RA3, Cook-Deegan R4.

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Abstract

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.

KEYWORDS:

Bayh-Dole Act; Bermuda Principles; Big science; Bioinformatics; Biotechnology; C. elegans; Celera Genomics; Co-production; Community resource projects; DNA Databank of Japan (DDBJ); DNA sequencing; Data hoarding; Data release; Data sharing; Databases; Department of Energy (DOE); Ethical Legal and Social Implications (ELSI); European Bioinformatics Institute (EBI); GenBank; Gene patenting; Genetic mapping; Genetics; Genomecommons; Genomics; Human Genome Project (HGP); Intellectual property; Medical genetics; Model organisms; Molecular biology; Moral economy of science; National Center for Human Genome Research (NCHGR); National Human Genome Research Institute (NHGRI); National Institutes of Health (NIH); Nematode worm; Open science; Patents; Physical mapping; Post-genomics; Public domain; Reference sequence; Science policy; Wellcome Trust