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.
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Notes
In 2013, Jennifer Shaw and Simon Chaplin of the Wellcome Library provided KMJ and RC-D with restricted access, in the Library’s Rare Materials Room, to the hard-copy transcripts of the first three International Strategy Meetings on Human Genome Sequencing (1996–1998). As per the Wellcome Library’s guidelines for restricted access to its materials, all direct quotes taken from these transcripts were anonymized at the time of transcription (in KMJ’s personal research notes) and remain so in this manuscript. Some participants referred to the Chatham House Rule as governing discussions at the Bermuda meetings: “When a meeting, or part thereof, is held under the Chatham House Rule, participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed” (https://www.chathamhouse.org/chatham-house-rule, accessed 24 May 2018). Yet we have been unable to confirm or deny this, and the transcripts contain no discussion about rules for identification or attribution. Meeting materials – including post-meeting reports, the agenda, and lists of participants – are publicly available in archives from several sources, including FOIA documents from NHGRI, files in private hands, and the Wellcome Library. Moreover, the list of participants from the 1998 Bermuda meeting was published (Guyer 1998). It is apparent, therefore, that the Chatham House Rule was at least not fully implemented, though the participants in the meetings did not give explicit permission to be quoted. Thus in addition to anonymizing all quotes from the Bermuda meeting transcripts, we do not attribute other quotations or viewpoints expressed during the meetings to particular individuals, unless these individuals have subsequently attributed such quotations or views to themselves.
Abbreviations
- ABI:
-
Applied Biosystems
- ACeDB :
-
A C. elegans Data Base
- AFM:
-
Association Française contre les Myopathies (French Muscular Dystrophy Association)
- BAC:
-
Bacterial artificial chromosome
- BBN:
-
Bolt, Beranek, and Newman
- BITNET:
-
Because It’s There NETwork, or Because It’s Time NETwork
- BMBF:
-
Bundesministerium für Bildung und Forschung (German Federal Ministry of Education and Research)
- cDNA:
-
Complementary DNA
- CEPH:
-
Centre d’Etude du Polymorphisme Humain (Center for the Study of Human Polymorphisms, now Foundation Jean-Dausset-CEPH)
- CNRS:
-
Centre National de la Recherche Scientifique (French basic research agency)
- Consed :
-
Consensus editor
- Contig:
-
Contiguous DNA sequence
- CSHL:
-
Cold Spring Harbor Laboratory
- DDBJ:
-
DNA Databank of Japan
- DEC:
-
Declaration of Exceptional Circumstances
- DFG:
-
Deutsche Forschungsgemeinschaft (German basic research agency)
- DHGP:
-
German Human Genome Project
- DLR:
-
Deutsches Zentrum für Luft- und Raumfahrt (the German Aerospace Centre)
- DNA:
-
Deoxyribose nucleic acid
- DOE:
-
US Department of Energy
- EBI:
-
European Bioinformatics Institute
- EC:
-
European Community
- ELSI:
-
Ethical, Legal, and Social Implications (of genomics)
- EMBL:
-
European Molecular Biology Laboratory
- ERDA:
-
Energy Research and Development Administration
- EST:
-
Expressed sequence tag
- FTP:
-
File transfer protocol
- FOSS:
-
Free and Open Source Software
- G5:
-
The five largest HGP sequencing centers after 1999 (the Sanger Centre, Washington University in St. Louis, the Broad Institute of Harvard and MIT, the DOE Joint Genome Institute, and the Baylor College of Medicine)
- GBF:
-
German Research Centre for Biotechnology (in Braunschweig)
- GDB:
-
Genome Database (at Johns Hopkins University)
- GESTEC:
-
NIH Genome Science and Technology centers
- HGI:
-
Human Genome Initiative (of the US DOE)
- HGMP:
-
Human Genome Mapping Programme (of the UK MRC)
- HGMW:
-
Human Genome Mapping Workshop
- HGP:
-
Human Genome Project
- HGS:
-
Human Genome Sciences
- HHMI:
-
Howard Hughes Medical Institute
- HTML:
-
HyperText Markup Language
- HLA:
-
Human Leukocyte Antigen
- HUGO:
-
Human Genome Organization
- ICRF:
-
Imperial Cancer Research Fund (in London)
- IHGSC:
-
International Human Genome Sequencing Consortium
- IMB:
-
Institute of Molecular Biotechnology (in Jena)
- JGI:
-
Joint Genome Institute (of the DOE)
- JST:
-
Japan Science and Technology Agency (also STA)
- KB:
-
Kilobase (or Kb, kb)
- LANL:
-
Los Alamos National Laboratory
- LLNL:
-
Lawrence Livermore National Laboratory
- LMB:
-
Laboratory of Molecular Biology (University of Cambridge)
- MB:
-
Megabase (or Mb, mb)
- MBL:
-
Marine Biological Laboratory (in Woods Hole, MA)
- MIM :
-
Mendelian Inheritance in Man
- MIT:
-
Massachusetts Institute of Technology
- MPI:
-
Max Planck Institut für Molekulare Genetik (in Berlin)
- MRC:
-
UK Medical Research Council
- NCBI:
-
US National Center for Biotechnology Information
- NCHGR:
-
US National Center for Human Genome Research
- NCI:
-
US National Cancer Institute
- NHGRI:
-
US National Human Genome Research Institute
- NIH:
-
US National Institutes of Health
- NINDS:
-
US National Institute of Neurological Disorders and Stroke
- NLM:
-
US National Library of Medicine
- NRC:
-
US National Research Council (of the National Academy of Sciences)
- NSF:
-
US National Science Foundation
- OBER:
-
Office of Biological and Environmental Research (of the DOE)
- OHER:
-
Office of Health and Environmental Research (of the DOE)
- OMIM :
-
Online Mendelian Inheritance in Man
- ORNL:
-
Oak Ridge National Laboratory
- OSRD:
-
Office of Scientific Research and Development
- OTA:
-
Office of Technology Assessment (of the US Congress)
- PCR:
-
Polymerase chain reaction
- PDB:
-
Protein Data Bank (at the Brookhaven National Laboratory)
- Phrap :
-
Phil’s revised assembly program
- Phred :
-
Phil’s revised editor
- PKD:
-
Polycystic kidney disease
- rDNA:
-
Recombinant DNA
- RIKEN:
-
Japanese Institute of Physical and Chemical Research
- RNA:
-
Ribonucleic acid
- RZPD:
-
German genomic Resource Center (at the MPI in Berlin)
- SAIL:
-
Stanford Artificial Intelligence Laboratory
- SCW:
-
Single Chromosome Workshop
- SNP:
-
Single nucleotide polymorphism
- STA:
-
Japan Science and Technology Agency (also JST)
- STS:
-
Science and technology studies OR sequence-tagged site (meaning apparent with context)
- TIGR:
-
The Institute for Genomic Research
- UCSF:
-
University of California at San Francisco
- UJAD:
-
Unpublished in Journals and Available in Databases (Stephen Hilgartner’s term)
- UNESCO:
-
The United Nations Educational, Scientific, and Cultural Organization
- USPTO:
-
United States Patent and Trademark Office
- USSR:
-
Union of Soviet Socialist Republics
- WCS:
-
Worm Community System
- YAC:
-
Yeast artificial chromosome
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1996 Wellcome Trust Programme: “Sequencing the Human Genome: International Strategy Meeting,” with Sulston’s handwritten annotations, included in facsimile from John Sulston to “Genome Seq Ctr” (presumably Waterston’s St. Louis Center), 1 Dec 1995; together with “International Strategy Meeting to Progress Large-Scale Human Genome Sequencing, Provisional Programme,” also with Sulston’s handwritten annotations, undated manuscript; both in John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 3/3.”
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Skene to Sulston 1996: Cover letter, packet from Barbara Skene, including 1996 Wellcome Trust Bermuda Meeting Report (above), to John Sulston, 5 Jun 1996, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 3/3.”
Steward to Bentley 1996: David Bentley, comments on “Summary of Principles agreed at the International Strategy Meeting on Human Genome Sequencing in Bermuda,” handwritten on facsimile from Jilly Steward, Wellcome Trust, 12 Mar 1996, which also included a letter from Barbara Skene and the draft Bermuda Principles to be published by HUGO, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 2/3.”
Sulston 1996 Notes: John Sulston, handwritten notes from 1996 Bermuda Meeting, unpublished manuscripts, Feb 1996, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 3/3.”
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Websites
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Legal Cases, Legal Codes, and Public Policies
Association for Molecular Pathology v. Myriad Genetics, Inc. 133 S. Ct. 2107 (June 13, 2013).
D’Arcy v. Myriad Genetics, Inc. [2015] HCA 35 (7 Oct).
Diamond v. Chakrabarty 447 U.S. 303 (1980).
Univ. of Utah Res. Foundation et al. v. Ambry Genetics Corp. No. 2014-1361 (Fed. Cir. Dec. 17, 2014).
35 U.S.C. Patentability of Inventions and Grant of Patents. §§100-103.
35 U.S.C. Patentability of Inventions and Grant of Patents. §§ 104.
The Atomic Energy Act of 1946, Pub. L. No. 79-585.
Atomic Energy Act of 1954, Pub. L. No. 83-703.
Energy Reorganization Act of 1974, Pub. L. No. 93-438.
Federal Nonnuclear Energy Research and Development Act of 1974, Pub. L. No. 93-577.
Department of Energy Organization Act (1977), Pub. L. No. 95-91.
Patent and Trademark Law Amendments Act, or Bayh-Dole Act (1980), Pub. L. No. 99-517.
Leahy-Smith America Invents Act of 2011, Pub. L. No. 112-29.
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Acknowledgements
For reading countless drafts, providing insights, ideas, criticisms, primary sources, and moral support, and saving us from many embarrassing errors, the authors would like to thank: Misha Angrist, Nonie Arora, A. Lane Baldwin, Jenny Bangham, Elbert Branscomb, Christian Burks, Graham Cameron, Eli Casdin, Subhashini Chandrasekharan, Simon Chaplin, Stephanie Chen, Jae Cheon, Francis Collins, Nathaniel Comfort, Jorge Contreras, Angela Creager, Soraya de Chadarevian, Lauren Dame, Katherine W. Darling, Kevin Davies, Sonia Dermer, Michael Dietrich, Christopher Donohue, Michele Easter, Sean Eddy, Asao Fujiyama, Miguel García-Sancho, Eric Green, Phil Green, Christopher Heaney, Stephen Hilgartner, LaDeana Hillier, Ursula Hurtenbach, Sheila Jasanoff, Cristina Kapustij, Daniel Kevles, Frank Laplace, Sabina Leonelli, Susan Lindee, Jane Maienschein, Mollie Minear, Michael Morgan, Richard Myers, Annie Niehaus, Maynard Olson, Aristides Patrinos, Mila Pollock, Gregory Radick, Arti Rai, Ramya Rajagopalan, Jenny Reardon, Karen Rader, Marsha Richmond, Laura Rodriguez, Jane Rogers, Alex Roland, Alex Rosenberg, Jennifer Shaw, Hallam Stevens, John Sulston, Gert-Jan van Ommen, Jennifer K. Wagner, Robert Waterston, Iain Watts, Jean Weissenbach, Andreas Weller, Kris Wetterstrand, Huntington Willard, Heidi Williams, and Jenny Zhao. Out of this extensive list of friends and colleagues, several individuals deserve special mention. Robert Waterston, and the now late John Sulston, both deserve extraordinary thanks for the patience, eagerness, meticulousness, and good humor with which they helped to guide us through this intricate narrative. Over the years, they read numerous drafts, answered dozens of questions, and edited our writing for accuracy, clarity, and style. These were tasks that occupied many more hours of their valuable time than we ever had a right to expect; yet they saved us from countless errors, and made this manuscript a better final product by far. Furthermore, Eric Green, the current director of the NHGRI, and Christopher Donohue, of the NHGRI and the institute’s History of Genomics Program, have provided us with unending support, flexibility, encouragement, understanding, and enthusiasm for a project which turned out to be much more complicated, and to take much longer to complete—literally, years longer—than the authors initially anticipated. Angela Creager has always understood the importance and pride that her student, KMJ, placed in this project, and is to be thanked for her patience and trust that, despite all the time KMJ was spending on this manuscript, her dissertation would still get written in a (more or less) timely fashion. Alex Roland has supported this work from the beginning, reading nearly every iteration and never hesitating to note when a turn of phrase failed to make sense, a sentence did not parse, or a comma seemed out of place. The students and faculty of the 2014 STS Summer School at Harvard University, which was focused on “Science and Governance at the Frontiers of Life” and organized by Sheila Jasanoff (Harvard Kennedy School), created a scintillating space for dialogue and provided crucial suggestions for literature. “Interactional co-production” has been an indispensable analytical frame for this manuscript, and Sheila Jasanoff and Stephen Hilgartner in particular have remained interested in and supportive of this project for a long time. So has Sabina Leonelli, who read through a mature draft with a critical eye, suggested many references, and offered moral and scholarly support over countless meals (KMJ) and collaborative writing stints (RAA) in Exeter and elsewhere. Finally, the intrepid editors of the Journal of the History of Biology, first Michael Dietrich and then Karen Rader and Marsha Richmond, have shepherded this manuscript through each of its many stages with kindness and productive criticism, never doubting that it was possible to turn it into a publishable product and often providing much-needed advice and encouragement on very short notice. Thank you to everyone for never giving up on us. It is our pleasure to acknowledge you here. An additional cadre of librarians, archivists, and scholars also provided superb writing, research, and editorial assistance. We owe great debts of thanks to the staff and archivists at the Bioethics Research Library at Georgetown University (especially Martina Darragh, Patty Martin, and Nat Norton), the Cold Spring Harbor Laboratory (CSHL) Library and Archives (especially Mila Pollock and Stephanie Satalino), the Duke University Libraries (especially Susan Ivey and Jim Tuttle), the Freedom of Information Act (FOIA) office at NHGRI (especially Suzanne A. Freeman and Christy Cecil), and the Wellcome Library in London (especially Simon Demissie, Will Greenacre, and most especially, Jennifer Shaw). Two anonymous reviewers for the Journal of the History of Biology gave trenchant feedback and critiques, improving the manuscript enormously, and we hope to have done justice to their considerable dedication of time and energy. With the assistance of Patty Martin, in the final copy-editing stages, Sonia Dermer checked the majority of the manuscript’s quotations and references in the Bioethics Research Library at Georgetown. She caught many errors, and we are in her debt. Jim Tuttle and Susan Ivey at the Duke University Libraries, with other members of the Duke Libraries staff, provided invaluable technological assistance as we built the online repository of research materials for this project, now available in the Archival Collections for the Center for Public Genomics on DukeSpace. Finally, several individuals at the Wellcome Library worked very hard, with the Wellcome Trust, to make the Bermuda meeting transcripts from all 3 years (1996–1998) available to KMJ and RC-D on a restricted basis in their Rare Materials Room in London, alongside facilitating access to further valuable materials from their rich collections in the history of genetics. History, like genomics, is a collaborative undertaking, and for all of this assistance over 8 years we are eternally grateful. We presented numerous versions of this work in progress at scholarly venues, and for their critiques and commentaries we are indebted to the participants in, and organizers of, our panels and presentations at: the 2011 ELSI Congress, NHGRI, “Exploring the ELSI Universe,” in Chapel Hill, NC (“Examining the History and Implications of the ‘Bermuda Principles’ for Data Sharing”); the 3rd biennial meeting of the Society for the Philosophy of Science in Practice, in Exeter, UK (“Examining the History and Implications of the ‘Bermuda Principles’ for Data Sharing”); the 2011 annual meeting of the Society for the Social Studies of Science (4S), in Cleveland, OH (“Exploring the Impacts of the ‘Bermuda Principles’ on Collaborative Health Research,” in “Collaboration from Life Sciences to Health Sciences and Care,” organized by Bart Penders, Radboud University Nijmegen, John Parker, University of California at Santa Barbara, and Niki Vermeulen, University of Vienna); the 2012 Gordon Research Conference and Seminar on Science and Technology Policy (“Science and Technology in Global Context”), in Waterville Valley, NH (poster entitled, “‘They worked without resting’: Building the policy of international prepublication data sharing during the Human Genome Project”); the 2012 KLI/Altenberg Symposium in Vienna, Austria (“Free and Unfettered? Scientific Communities Meet the Internet through the Bermuda Principles”); a 2012 Egenis seminar, at the University of Exeter, UK (“The Bermuda Triangle: Principles, Practices, and Pragmatics in Genomic Data Sharing”); a 2012 seminar at the Lyman Briggs College, in the Department of Philosophy, at Michigan State University in East Lansing, MI (“The Bermuda Triangle: Principles, Practices, and Pragmatics in Genomic Data Sharing”); the 2013 biennial meeting of the International Society for the History, Philosophy, and Social Studies of Biology (ISHPSSB) in Montpellier, France (“Patenting Life: Genes and Generations,” organized by Berris Charnley, Griffiths University and St. Anne’s College, University of Oxford); the 2014 Joint Atlantic Seminar for the History of Biology (JAS-Bio) at Johns Hopkins University in Baltimore, MD (“‘They gave it away’: International data sharing in the Human Genome Project”); the March 23rd, 2015 History of Science Seminar, Program in History of Science, at Princeton University in Princeton, NJ; the 2015 “The Genomic Open: Then and Now” workshop at the University of California, Santa Cruz (organized by Jenny Reardon, UC Santa Cruz; talk entitled “The Bermuda Triangle: Pragmatics, Principles, and Policies”); and the 2015 annual meeting of the History of Science Society (HSS) in San Francisco, CA (“‘They gave it away’: Building an International Policy for Data Sharing in the Human Genome Project,” in “Scientific Openness and Its Discontents in the History of Scientific Information,” organized by Iain Watts, Princeton University). This research would not have been possible without the enormous generosity and cooperation of our numerous interviewees, whose names are listed in the References section. These individuals, who agreed to interview with us in person, over the phone, and/or through email correspondence, read and edited lengthy interview transcripts, answered our persistent follow-up questions, furnished historical documents from their personal files, and supported our construction of a digital archive for this project. Throughout, we have done our best to reciprocate their enthusiasm and encouragement. Kathleen Slover, of Accent on Words in Charlotte, NC, transcribed our interviews with great accountability and care. Finally, for moral, administrative, and all other kinds of support over the past 8 years, in addition to those listed above, we owe bottomless debts of gratitude to Susan Brooks, who kept the Center for Public Genomics running, and to Kathryn Cook-Deegan, Glenn Hawke, and T. Cole Jones, who kept us running. All remaining errors are our own.
Sir John Sulston, June 2001
Sir John Sulston (1942-2018), sitting outside the Sanger Centre in Hinxton, Cambridge, UK, June 2001. Photo credit: Neil Turner/TSL Education Ltd. Reproduced with permission.
Funding
Kathryn Maxson Jones led the conduct of this research from 2010 to 2013, and the writing of the manuscript from 2013–2018. From 2010–2013, she worked as a Research Aide at the Center for Public Genomics at Duke University, a Center of Excellence in Ethical, Legal, and Social Implications (ELSI) Research co-funded by the US Department of Energy and the US National Human Genome Research Institute (NHGRI) under the NIH Grant Number P50-HG-003391. In September 2018, while maintaining her PhD candidacy at Princeton University, Kathryn Maxson Jones will begin her tenure as a McDonnell Foundation Scholar at the Marine Biological Laboratory in Woods Hole, MA, which will last through June 2019. From 2002–2016, Robert Cook-Deegan was a Research Professor of Public Policy, Internal Medicine, and Biology at Duke University, and from 2004–2016 he served as the director of the Center for Public Genomics. He is also a senior fellow at FasterCures, a center of the nonprofit Milken Institute. Other funding included grants from the NIH (R01-HG-008918), the United States Studies Centre (USSC) of the University of Sydney, Australia (“The Ethos and Effects of Data-Sharing Rules: Examining the History of the ‘Bermuda Principles’ and Their Impact on US 21st Century Science,” Rachel A. Ankeny and Robert M. Cook-Deegan, 2011), and the Ewing Marion Kauffman Foundation. The contents of this publication are solely the responsibility of the authors, and do not reflect the views of their funders or employers. The charges associated with making this article open access were funded by an award from the Wellcome Library Open Access Fund.
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The authors gratefully dedicate this article to Sir John Sulston (27 March 1942–6 March 2018), who sadly did not live to see this paper in print, but who reviewed it and contributed greatly to it. His vision for open science guided the public Human Genome Project, based on science to benefit society. He is missed.
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Maxson Jones, K., Ankeny, R.A. & Cook-Deegan, R. The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project. J Hist Biol 51, 693–805 (2018). https://doi.org/10.1007/s10739-018-9538-7
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DOI: https://doi.org/10.1007/s10739-018-9538-7
Keywords
- Bayh-Dole Act
- Bermuda Principles
- Big science
- Bioinformatics
- Biotechnology
- C. elegans
- Celera Genomics
- Co-production
- Community resource projects
- Data hoarding
- Data release
- Data sharing
- Databases
- DNA Databank of Japan (DDBJ)
- Department of Energy (DOE)
- DNA sequencing
- Ethical Legal and Social Implications (ELSI)
- European Bioinformatics Institute (EBI)
- GenBank
- Gene patenting
- Genetics
- Genetic mapping
- 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