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

Jones, Kathryn Maxson; Ankeny, Rachel A.; Cook-Deegan, Robert

doi:10.1007/s10739-018-9538-7

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

Journal Article · 01 November 2018 · Journal of the History of Biology

DOI: https://doi.org/10.1007/s10739-018-9538-7 · OSTI ID:1817181

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Princeton Univ., NJ (United States); Marine Biological Lab., Woods Hole, MA (United States)
Univ. of Adelaide, SA (Australia)
Barrett & O’Connor Washington Center, Washington, D.C. (United States)

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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Research Organization:: Univ. of California, Oakland, CA (United States)

Sponsoring Organization:: USDOE

Grant/Contract Number:: AC02-05CH11231

OSTI ID:: 1817181

Journal Information:: Journal of the History of Biology, Journal Name: Journal of the History of Biology Journal Issue: 4 Vol. 51; ISSN 0022-5010

Publisher:: SpringerCopyright Statement

Country of Publication:: United States

Language:: English

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Related Subjects

59 BASIC BIOLOGICAL SCIENCES
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
Genome commons
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

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

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