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.
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.
- ACeDB :
A C. elegans Data Base
Association Française contre les Myopathies (French Muscular Dystrophy Association)
Bacterial artificial chromosome
Bolt, Beranek, and Newman
Because It’s There NETwork, or Because It’s Time NETwork
Bundesministerium für Bildung und Forschung (German Federal Ministry of Education and Research)
Centre d’Etude du Polymorphisme Humain (Center for the Study of Human Polymorphisms, now Foundation Jean-Dausset-CEPH)
Centre National de la Recherche Scientifique (French basic research agency)
- Consed :
Contiguous DNA sequence
Cold Spring Harbor Laboratory
DNA Databank of Japan
Declaration of Exceptional Circumstances
Deutsche Forschungsgemeinschaft (German basic research agency)
German Human Genome Project
Deutsches Zentrum für Luft- und Raumfahrt (the German Aerospace Centre)
Deoxyribose nucleic acid
US Department of Energy
European Bioinformatics Institute
Ethical, Legal, and Social Implications (of genomics)
European Molecular Biology Laboratory
Energy Research and Development Administration
Expressed sequence tag
File transfer protocol
Free and Open Source Software
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)
German Research Centre for Biotechnology (in Braunschweig)
Genome Database (at Johns Hopkins University)
NIH Genome Science and Technology centers
Human Genome Initiative (of the US DOE)
Human Genome Mapping Programme (of the UK MRC)
Human Genome Mapping Workshop
Human Genome Project
Human Genome Sciences
Howard Hughes Medical Institute
HyperText Markup Language
Human Leukocyte Antigen
Human Genome Organization
Imperial Cancer Research Fund (in London)
International Human Genome Sequencing Consortium
Institute of Molecular Biotechnology (in Jena)
Joint Genome Institute (of the DOE)
Japan Science and Technology Agency (also STA)
Kilobase (or Kb, kb)
Los Alamos National Laboratory
Lawrence Livermore National Laboratory
Laboratory of Molecular Biology (University of Cambridge)
Megabase (or Mb, mb)
Marine Biological Laboratory (in Woods Hole, MA)
- MIM :
Mendelian Inheritance in Man
Massachusetts Institute of Technology
Max Planck Institut für Molekulare Genetik (in Berlin)
UK Medical Research Council
US National Center for Biotechnology Information
US National Center for Human Genome Research
US National Cancer Institute
US National Human Genome Research Institute
US National Institutes of Health
US National Institute of Neurological Disorders and Stroke
US National Library of Medicine
US National Research Council (of the National Academy of Sciences)
US National Science Foundation
Office of Biological and Environmental Research (of the DOE)
Office of Health and Environmental Research (of the DOE)
- OMIM :
Online Mendelian Inheritance in Man
Oak Ridge National Laboratory
Office of Scientific Research and Development
Office of Technology Assessment (of the US Congress)
Polymerase chain reaction
Protein Data Bank (at the Brookhaven National Laboratory)
- Phrap :
Phil’s revised assembly program
- Phred :
Phil’s revised editor
Polycystic kidney disease
Japanese Institute of Physical and Chemical Research
German genomic Resource Center (at the MPI in Berlin)
Stanford Artificial Intelligence Laboratory
Single Chromosome Workshop
Single nucleotide polymorphism
Japan Science and Technology Agency (also JST)
Science and technology studies OR sequence-tagged site (meaning apparent with context)
The Institute for Genomic Research
University of California at San Francisco
Unpublished in Journals and Available in Databases (Stephen Hilgartner’s term)
The United Nations Educational, Scientific, and Cultural Organization
United States Patent and Trademark Office
Union of Soviet Socialist Republics
Worm Community System
Yeast artificial chromosome
Interviews: First-Person Interviews
Adams interview 2012: Mark Adams, by KMJ and RC-D, by telephone, 1 Feb 2012.
Ashburner interview 2011: Michael Ashburner, by KMJ and RC-D, Cambridge, UK, 2 Jul 2011. http://hdl.handle.net/10161/7690.
Branscomb interview 2011: Elbert Branscomb, by KMJ and RC-D, by telephone, 17 Oct 2011. http://hdl.handle.net/10161/7693.
Cameron interview 2012: Graham Cameron, by KMJ and RC-D, by telephone, 16 Mar 2012. http://hdl.handle.net/10161/7706.
Caskey interview 2012: C. Thomas Caskey, by KMJ and RC-D, by telephone, 2 Mar 2012. http://hdl.handle.net/10161/7696.
Collins interview 2012: Francis Collins, by KMJ and RC-D, Rockville, MD, 12 Apr 2012. http://hdl.handle.net/10161/7704.
Cox interview 2011: David Cox, by KMJ and RC-D, by telephone, 11 Oct 2011.
Durbin interview 2012: Richard Durbin, by KMJ, by telephone, 9 Mar 2012. http://hdl.handle.net/10161/7702.
Eddy interview 2012: Sean Eddy, by KMJ and RC-D, by telephone, 15 Mar 2012. http://hdl.handle.net/10161/7705.
Green interview 2011: Eric Green, by KMJ and RC-D, Rockville, MD, 8 Dec 2011. http://hdl.handle.net/10161/7691 (will become available on 27 Feb 2022).
Green interview 2012: Phil Green, by KMJ, by telephone, 18 Apr 2012.
Guyer and Peterson interview 2011: Mark Guyer and Jane Peterson, by KMJ and RC-D, Rockville, MD, 18 Aug 2011. http://hdl.handle.net/10161/12722.
Hillier interview 2012: LaDeana Hillier, by KMJ and RC-D, by telephone, 5 Apr 2012. http://hdl.handle.net/10161/7701.
Hubbard interview 2011: Tim Hubbard, by KMJ, RA, and RC-D, by telephone, 15 Nov 2011.
Lander interview 2012: Eric Lander, by KMJ, Cambridge, MA, 23 Apr 2012.
Lehrach interview 2012: Hans Lehrach, by KMJ, by telephone, 10 Apr 2012. http://hdl.handle.net/10161/7703.
Marshall interview 2012: Eliot Marshall, by KMJ and RC-D, by telephone, 22 Mar 2012. http://hdl.handle.net/10161/7707.
McCombie interview 2012: Richard McCombie, by KMJ, by telephone, 3 May 2012.
Morgan and Wallace interview 2012: Michael Morgan and Susan Wallace, by KMJ and RC-D, by telephone, 4 Apr 2012. http://hdl.handle.net/10161/7700.
Myers interview 2011: Richard Myers, by KMJ, RA, and RC-D, by telephone, 29 Nov 2011. http://hdl.handle.net/10161/7694.
Olson interview 2012: Maynard Olson, by KMJ, RA (via Skype), and RC-D, Durham, NC, 28 Feb 2012. http://hdl.handle.net/10161/7709.
Patrinos interview 2011: Aristides Patrinos, by KMJ and RC-D, by telephone, 1 Sept 2011. http://hdl.handle.net/10161/7689.
Roe interview 2012: Bruce Roe, by KMJ, via Skype, 30 Mar 2012. http://hdl.handle.net/10161/7710.
Rogers interview 2012: Jane Rogers, by KMJ and RC-D, by telephone, 29 Mar 2012.
Rosenthal interview 2011: André Rosenthal, by KMJ and RC-D, by telephone, 12 Dec 2011.
Sakaki interview 2011: Yoshiyuki Sakaki, by KMJ, RA, and RC-D, by telephone, 1 Dec 2011. http://hdl.handle.net/10161/7688.
Van Ommen interview 2012: Gert-Jan van Ommen, by KMJ and RC-D, by telephone, 2 Feb 2012. http://hdl.handle.net/10161/7695.
Venter interview 2012: J. Craig Venter, by KMJ, RA, and RC-D, by telephone, 27 Jul 2012. http://hdl.handle.net/10161/7697.
Waterston and Sulston interview 2011: Robert Waterston and John Sulston, by KMJ, RA, and RC-D, Durham, NC, 15 Nov 2011. http://hdl.handle.net/10161/7692.
Weissenbach interview 2012: Jean Weissenbach, by KMJ and RC-D, by telephone, 9 Feb 2012. http://hdl.handle.net/10161/12721.
Email Interviews and Other Electronic Correspondence
BMBF to KMJ, 2012 and 2013. Andreas Weller, Frank Laplace, and Ursula Hurtenbach, on formal behalf of BMBF, by KMJ, 7 Nov 2012, and follow-up email, Weller to KMJ, 5 Jul 2013. http://hdl.handle.net/10161/7761.
Contreras to authors 2017: Jorge Contreras, email communication to authors, 20 Apr 2017.
Green to KMJ 2018: Phil Green, email communication to KMJ, 21 Jan 2018.
Hattori to KMJ 2012: Masahira Hattori, email communication to KMJ, 26 Jul 2012. http://hdl.handle.net/10161/7708.
Waterston to KMJ 2017: Robert Waterston, personal communication in the form of manuscript edits in a Microsoft Word document, on 15 Feb 2017.
Waterston to KMJ 2018: Robert Waterston, personal communication in the form of manuscript edits in a Microsoft Word document, on 5 Jun 2018.
Weissenbach to KMJ 2017: Jean Weissenbach, email communication to KMJ, 5 Jan 2017.
Archival Sources: Bioethics Research Library, Kennedy Institute of Ethics, Georgetown University, Washington, D.C.
Cook-Deegan Archive: “The Robert Cook-Deegan Human Genome Archive,” containing the full scope of archival materials for Cook-Deegan’s The Gene Wars: Science, Politics, and the Human Genome (1994), created with partial support from the Duke University Center for Public Genomics (2004-2016), a Center of Excellence in ELSI Research co-funded by the NHGRI and the DOE (P50-HG-003391). https://bioethics.georgetown.edu/library-materials/digital-collections/robert-cook-deegan-human-genome-archive/.
Clinton Digital Library, William J. Clinton Presidential Library and Museum, Little Rock, AR
Lane 1999: Neal Lane, “Human Genome,” Memorandum for the President on the subject of “Genome Patenting,” 1 Oct 1999, Domestic Policy Council, Bruce Reed, and Subject Files. Clinton Presidential Records: White House Staff and Office Files. https://clinton.presidentiallibraries.us/items/show/31391.
Joint Statement on the Human Genome 2000: “Joint Statement on the Human Genome, Questions and Answers,” unpublished draft 8 Mar 2000, Heather Hurlburt Collection, Office of Speechwriting, Office of Communications, OA/Box Number 19909, Folder “Binder: Briefing Materials for MOS/MOT Event Access to Information on the Human Genome March 14, 2000,” Clinton Presidential Records: White House Staff and Office Files. https://clinton.presidentiallibraries.us/items/show/32399.
The Cold Spring Harbor Laboratory Library and Archives, Cold Spring Harbor, NY
4th International Strategy Meeting 1999: “4th International Strategy Meeting on Human Genome Sequencing, CSHL (19 May 1999),” facsimile from Jilly Steward (The Wellcome Trust) to James D. Watson, 30 Jul 1999, unpublished meeting summary Jul 1999, James D. Watson Collection, JDW/2/9/1/117. http://libgallery.cshl.edu/items/show/53724.
CSHL International History 2009: “International History of the Human Genome Project: Catalog of Original Materials,” descriptive online catalog initiated by CSHL and The Wellcome Trust, 2009. http://genomelegacy.org/.
Davies 2016: Kevin Davies, ed., The Human Genome Project: An Annotated & Interactive Scholarly Guide to the Project in the United States, e-book maintained by CSHL, 2016. https://libwiki.cshl.edu/confluence/display/HGP/Home;jsessionid=C69CC57FC488E28A1B20CE888087370B.
Ferry 2009: Georgina Ferry, “John Sulston – Biography,” Cold Spring Harbor Oral History Collection, CSHL Digital Archives, 2009. http://library.cshl.edu/oralhistory/speaker/john-sulston/.
MRC Review 1992: UK Medical Research Council, MRC Review of the UK Human Genome Mapping Project, Project Manager’s Report September 1992, James D. Watson Collection, JDW/2/9/2/16. http://libgallery.cshl.edu/items/show/53763.
NCHGR Genome Report Card 1992: “NCHGR Genome Report Card,” overview of progress on the five-year stated HGP goals, Mar 1992, James D. Watson Collection, JDW/2/9/2/13. http://libgallery.cshl.edu/items/show/53760.
The Duke University Libraries, DukeSpace Archival Collections, Center for Public Genomics Research Files, Landmark Genomics Technologies, Unpublished Manuscripts, Durham, NC
Crossman and Rai 2005: Colin Crossman and Arti Rai, “A Brief History of BioPerl,” unpublished manuscript, 2005. http://hdl.handle.net/10161/11699.
The Duke University Libraries, DukeSpace Archival Collections, Center for Public Genomics Research Files, The Bermuda Principles, Research Email Correspondence, Durham, NC
Collins to sequencers and data 2000: Francis S. Collins, Director of the National Human Genome Research Institute (NHGRI), email message to the Directors of all HGP sequencing centers, 25 May 2000, and corresponding aggregate funding data, unpublished, compiled by Kris Wetterstrand (NHGRI) and courtesy of NHGRI. http://hdl.handle.net/10161/12719.
Waterston to authors Jan 2017: Robert Waterston, email communications to authors, 4 and 9 Jan 2017. https://hdl.handle.net/10161/16507.
Waterston to authors Feb 2017: Robert Waterston, email communications to authors, 17 Feb 2017. https://hdl.handle.net/10161/16508.
The Duke University Libraries, DukeSpace Archival Collections, Center for Public Genomics Research Files, The Bermuda Principles, The Bermuda Meetings, Durham, NC
1995 French HGP Planning Report; 1996 French HGP Planning Report: Jean Marc Egly, CNRS Large Sequencing Committee, and Francis Galibert (Committee president), “Expert report on the creation of a sequencing facility,” unpublished manuscript, 1995; PDF also contains Monique Meugnier (on behalf of Jean Weissenbach), facsimile containing 1996 French HGP planning report to Gérard Tobelem, 15 Apr 1996; both courtesy of Centre National de la Recherche Scientifique (CNRS) and Jean Weissenbach (Genoscope). https://dukespace.lib.duke.edu/dspace/handle/10161/7711.
1996 NIH Bermuda Meeting Report; Guyer to Collins 1996: A summary version of “Report of the International Strategy Meeting on Human Genome Sequencing held at the Princess Hotel, Southampton, Bermuda, on 25th–28th February 1996”; PDF also contains Mark Guyer, email to Francis Collins, 12 Mar 1996; both unpublished manuscripts, Feb–Mar 1996, obtained via Freedom of Information Act (FOIA) request to the National Human Genome Research Institute (NHGRI), FOIA Case Number: 12-FOI-00224-NHGRI-39937. http://hdl.handle.net/10161/7715.
1996 Bermuda Programme and Participants List: “International Strategy Meeting on Human Genome Sequencing, Revised Programme” (as opposed to 1996 Wellcome Trust Programme, below); and “Participants List,” unpublished manuscripts, Feb 1996, courtesy of Laura Rodriguez, National Human Genome Research Institute (NHGRI). http://hdl.handle.net/10161/7716.
1997 Bermuda Revised Delegates List; 1997 Bermuda Meeting Report: “SECOND INTERNATIONAL STRATEGY MEETING ON HUMAN GENOME SEQUENCING Revised Delegates List”; PDF also contains “CONFIDENTIAL Report of the Second International Strategy Meeting on Human Genome Sequencing held at the Hamilton Princess Hotel, Bermuda, on 27th February–2nd March 1997”; both unpublished manuscripts, Feb-Mar 1997, obtained via Freedom of Information Act (FOIA) request to the National Human Genome Research Institute (NHGRI), FOIA Case Number: 11-FOI-00056-NHGRI-38310. http://hdl.handle.net/10161/7733.
1998 Bermuda Meeting Photographs: Photographs of the 1998 International Strategy Meeting on Human Genome Sequencing, courtesy of Eric Green, National Human Genome Research Institute (NHGRI). http://hdl.handle.net/10161/7746.
1998 Bermuda “Optimism Factor” Photographs: Photographs showing ratios of promised to actual sequences produced from the major HGP sequencing centers from 1997 to 1998, courtesy of Richard Myers, HudsonAlpha Institute for Biotechnology. http://hdl.handle.net/10161/7739.
1998 Bermuda Meeting Report: “Third International Strategy Meeting on Human Genome Sequencing, Hamilton Princess Hotel, Bermuda, 27th February–1st March 1998, Sponsored by The Wellcome Trust, US National Institutes of Health, US Department of Energy, 164th Genome Technology Committee, Japan Society for Promotion of Science, UK Medical Research Council,” unpublished manuscript, Feb 1998, obtained via Freedom of Information Act (FOIA) request to the National Human Genome Research Institute (NHGRI), FOIA Case Number: 12-FOI-00224-NHGRI-39937. http://hdl.handle.net/10161/7745.
1998 Bermuda Programme and Provisional Delegates List: “THIRD INTERNATIONAL STRATEGY MEETING ON HUMAN GENOME SEQUENCING Programme” and “Provisional Delegates List as at 22nd January 1998,” unpublished manuscripts, Jan-Feb 1998, courtesy of Eric Green, National Human Genome Research Institute (NHGRI). http://hdl.handle.net/10161/7750.
Collins 1996 Notes; Resources Available Handouts 1996 (“Resources Available” handouts also appear in the folder, “International Strategy Meeting on Human Genome Sequencing File 1/3,” John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, The Wellcome Library Archives and Manuscripts, London, UK): Francis Collins, NHGRI, handwritten notes from “Wellcome Sequencing mtg. –Bermuda,” 25-28 Feb 1996; PDF also contains “Resources Available” handouts, completed by the heads of the attending laboratories and indicating mapping and sequencing facilities and other resources available at each laboratory, and a copy of Guyer to Collins, 12 Mar 1996 (see above); all unpublished manuscripts, Feb-Mar 1996, obtained via Freedom of Information Act (FOIA) request to the National Human Genome Research Institute (NHGRI). FOIA Case Number: U-FOI-00165-NHGRI-38639. http://hdl.handle.net/10161/7718.
Collins, Patrinos, and Morgan to Matsubara 1998: Francis Collins, NHGRI, Aristides Patrinos, DOE, and Michael Morgan, the Wellcome Trust, letter to Kenichi Matsubara, Osaka University, 9 Mar 1998, obtained via Freedom of Information Act (FOIA) request to the National Human Genome Research Institute (NHGRI), FOIA Case Number: 12-FOI-00224-NHGRI-39937. http://hdl.handle.net/10161/7737.
Collins and Patrinos to Laplace 1997: Francis Collins, NHGRI, and Aristides Patrinos, DOE, to Frank Laplace, BMBF, 21 Mar 1997, obtained via Freedom of Information Act (FOIA) request to the National Human Genome Research Institute (NHGRI), FOIA Case Number: 12-FOI-00224-NHGRI-39937. http://hdl.handle.net/10161/7727.
Hillier 1996 Notes: LaDeana Hillier, typewritten notes from “HUMAN ANALYSIS,” January 28-30, 1996, Sanger Centre, UK, courtesy of LaDeana Hillier, Washington University School of Medicine. http://hdl.handle.net/10161/7723.
Olson to Waterston 1996: Maynard Olson, email to Robert Waterston, 3 May 1996, courtesy of Maynard Olson, University of Washington, and Robert Waterston, University of Washington. http://hdl.handle.net/10161/7724.
Archival and Digitized Materials, National Human Genome Research Institute Archive, National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Rockville, MD
1997 Meeting Report Summary: “Summary of the Second International Strategy Meeting on Human Genome Sequencing,” unpublished manuscript, Feb-Mar 1997, with handwritten annotations by Francis Collins, sent to Collins by facsimile from Jill Kent (Scientific Officer-Genetics, Wellcome Trust), 4 Apr 1997, 7108-31.
Kent to Collins 1997: Jill Kent, email communication to Francis Collins, re: “Bermuda report 1,” including summary of Session II of 1997 Bermuda meeting, 4 Apr 1997, 7108-31.
Rosenthal to Morgan 1997: André Rosenthal, email communication to Michael Morgan, 7 Mar 1997, 7108-31.
Waterston to Collins 1997: Robert Waterston, email to Francis Collins, 9 Mar 1997, 7108-31.
Wellcome Collection, London, UK
1995 Interim NCHGR Policy: “Interim NCHGR Policy on Human Genomic DNA Sequence for Grants Under RFA HG-95-005,” later updated to “NHGRI Policy Regarding Intellectual Property of Human Genomic Sequence: Policy on Availability and Patenting of Human Genomic DNA Sequence Produced by NHGRI Pilot Projects (Funded Under RFA HG-95-005)” (listed under Websites), included in facsimile from Barbara Skene (Programme Manager-Genetics, Wellcome Trust) to John Sulston, 9 Apr 1996, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 3/3.”
1996 Bermuda Meeting Transcript: “First meeting of the ‘Bermuda Talks’ held over three days from the 25th to the 27th February 1996,” First international strategy meeting on human genome sequencing. Parts 1–12. Moving image and sound collections 1755AM (1–12) (transcript, Restricted).
1997 Bermuda Meeting Transcript: “Second meeting of the ‘Bermuda Talks’ held over three days from the 28th February to the 1st March 1997,” Second international strategy meeting on human genome sequencing. Parts 1–10. Moving image and sound collections 1756AM (transcript, Restricted).
1998 Bermuda Meeting Transcript: “Third and final meeting of the ‘Bermuda Talks’ held over three days from the 26th to 28th February 1998,” Third international strategy meeting on human genome sequencing. Parts 1–10. Moving image and sound collections 1757AM (1–10) (transcript, Restricted).
1996 NCHGR Pilot Study Press Release: “Pilot Study Explores Feasibility of Sequencing Human DNA,” included in facsimile from Robert Waterston to John Sulston, 11 Apr 1996, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 2/3.”
1996 Wellcome Trust Bermuda Meeting Report: “Report of the International Strategy Meeting on Human Genome Sequencing held at the Princess Hotel, Southampton, Bermuda, on 25th–28th February 1996,” full version of unpublished document (as opposed to 1996 NIH Bermuda Meeting Report, above), included in packet from Barbara Skene 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.”
1996 Wellcome Trust Bermuda Provisional Participants List: “Provisional Participants List” for “International Strategy Meeting on Human Genome Sequencing, 25th February 1996-28th February 1996,” undated manuscript, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 3/3.”
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.”
1996 Wellcome Trust Press Release: The Wellcome Trust, “International Strategy Meeting Agrees Principles of Early Data Release for Human Genomic Sequencing,” 17 Apr 1996, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, digital image previously available via Wellcome Images, now available in “International Strategy Meeting on Human Genome Sequencing File 1/3.”
Bentley to Sulston 1996: Email message from “drb” to “jes” (presumably, David Bentley, Sanger Centre, to John Sulston), 4 May 1996, re: “Datarelease,” with heavily penciled annotations in Sulston’s handwriting, including discussions about daily data release and the Sanger Centre’s policy, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 1/3.”
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.”
Sulston to Waterston c. 1996: John Sulston, facsimile to Robert Waterston on Sanger Centre stationery, undated, unpublished manuscript, John Sulston Archives and Manuscripts, PP/SUL/B/2/4/1/1, “International Strategy Meeting on Human Genome Sequencing File 1/3.”
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Begley, Sharon. 2017. “Psst, the human genome was never completely sequenced. Some scientists say it should be,” STAT News, https://www.statnews.com/2017/06/20/human-genome-not-fully-sequenced/, accessed 21 May 2018.
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“Cancer Moonshot.” 2017. National Cancer Institute, National Institutes of Health, https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative, accessed 23 May 2018.
“Data Release and Access Principles and Policy.” 2012. Institute Policies and Guidelines, National Human Genome Research Institute, National Institutes of Health, https://www.genome.gov/10001801/data-release-and-access-principles-and-policy/, accessed 28 May 2018.
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Giles, Chrissie. 2010. “‘From then on, it was daggers drawn…’: Michael Morgan on a decade of the Human Genome Project,” The Wellcome Trust Blog, The Wellcome Trust, https://blog.wellcome.ac.uk/2010/06/24/michael-morgan-on-a-decade-of-the-human-genome/, accessed 21 May 2018.
“International Consortium Completes Human Genome Project: All Goals Achieved; New Vision for Genome Research Unveiled.” 2003. News Release Archives 2003, Newsroom, National Human Genome Research Institute, National Institutes of Health, https://www.genome.gov/11006929/, accessed 2 Jun 2018.
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“NHGRI Policy for Release and Database Deposition of Sequence Data.” 2000. Institute Policies and Guidelines, National Human Genome Research Institute, National Institutes of Health, https://www.genome.gov/10000910/policy-on-release-of-human-genomic-sequence-data-2000/, accessed 1 Jun 2018.
“NHGRI Policy Regarding Intellectual Property of Human Genomic Sequence: Policy on Availability and Patenting of Human Genomic DNA Sequence Produced by NHGRI Pilot Projects (Funded Under RFA HG-95-005).” 1996. Institute Policies and Guidelines, National Human Genome Research Institute, National Institutes of Health, https://www.genome.gov/10000926/, accessed 24 May 2018.
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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.
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.
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
- Bayh-Dole Act
- Bermuda Principles
- Big science
- C. elegans
- Celera Genomics
- Community resource projects
- Data hoarding
- Data release
- Data sharing
- DNA Databank of Japan (DDBJ)
- Department of Energy (DOE)
- DNA sequencing
- Ethical Legal and Social Implications (ELSI)
- European Bioinformatics Institute (EBI)
- Gene patenting
- Genetic mapping
- Genome commons
- 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
- Physical mapping
- Public domain
- Reference sequence
- Science policy
- Wellcome Trust