Skip to main content
Log in

Constituting large-scale biology: Building a regime of governance in the early years of the Human Genome Project

  • Original Article
  • Published:
BioSocieties Aims and scope Submit manuscript

Abstract

This article examines how a regime for governing the US Human Genome Project (HGP) emerged during the early years of the project, paying special attention to the construction of what might be called its ‘governing frame’. This governing frame provided an interpretive scheme that constituted a set of entities (agents, spaces, things and actions) and promoted an official view of which agents would be endowed with what rights, duties, and privileges, powers and liabilities, and immunities and disabilities as they pertained to other agents and to control over spaces and things. The governing frame of the HGP regime was not codified formally in any single ‘constitutional’ document, but emerged through a historical process. The key elements of this regime took shape through a process of coproduction that constituted a new category of science – ‘large-scale biology’ – and the sociotechnical machinery for governing it. Simultaneously, extant molecular biology was redefined as ‘ordinary biology’, a form of science to be protected from and enhanced by Big Biology. The article is based on ethnographic research in the genome mapping and sequencing community during the HGP.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. In addition to Goffman’s concept, related ideas about frames are found in linguistics, cognitive science, computer science and media studies. For a catalog of some of the frames embedded in language, see FrameNet: https://framenet.icsi.berkeley.edu/fndrupal/.

  2. Hohfeld also distinguishes among powers (which impose the correlative liabilities on others) and immunities (which impose correlative disabilities).

  3. See Joly and Mangematin (1998) on the European yeast program, and Kaufmann (2004) and Rabinow (1999) and Rabeharisoa and Callon (2004) on Généthon.

  4. For example, the US program initially focused on global mapping and sequencing, whereas the HGMP aimed to identify specific genes and sequence gene fragments known as cDNAs. The Resource Centre set up by the HGMP (Balmer, 1998) differed substantially from the American genome centers (discussed below), in that the latter were oriented toward longer-term and more global mapping and sequencing goals. These differences in focus and ‘style’ were reflected in different modes of governance. The most important UK contributor to the HGP was the Sanger Centre, funded by the Wellcome Charitable Trust beginning in 1992. The Sanger Centre grew out of an international collaboration between the University of Cambridge and Washington University.

  5. Interviews were conducted with genome scientists, including directors of genome research centers; program officers in funding organizations; members of advisory committees; researchers in genome laboratories (including senior scientists, postdoctoral associates, graduate students and technicians). Some of the people interviewed were critics of aspects of the HGP, and some were scientists in overlapping/adjacent fields, such as human genetics. The bulk of these interviews were conducted in the United States, but genome scientists were also interviewed in the United Kingdom, Germany and France. Interviews, which typically ranged from 30 min to 2 hours in length, were audiorecorded and transcribed, and a variety of published and unpublished documents were also collected. Interviews were often accompanied by laboratory tours. Most of these interviews were conducted in academic settings or national laboratories, but some also took place in non-profit institutes or commercial firms after genome companies emerged in the mid-1990s. I also conducted ethnographic observations in major genome laboratories in the United States. I visited many of these laboratories more than once, usually for several days at a time. In one laboratory, I did more extended participant observation over a period of about a year and a half, studying the laboratory through repeated visits and by participating (part-time) in experimental work. I also attended parts of nine annual meetings on genome research held at Cold Spring Harbor, where the community involved in the HGP gathered each year for 5 days. In addition, I attended two science advisory group meetings in Washington DC, two chromosome mapping workshops and an international meeting on chromosome mapping policy.

  6. See Cantor (1990) for an example at the outset of the project and Collins, Morgan, and Patrinos (2003) at its completion.

  7. Fieldnotes from conference: Human Genome I, San Diego, October 1990.

  8. Pilot sequencing projects were also started, but on a small scale.

  9. These scientists were also excited to be part of an enterprise launching what they imagined would be a new stage in biological science.

  10. Balmer (1996) reports this also was true of the HGMP.

  11. President Bill Clinton and Prime Minister Tony Blair, linked by satellite, jointly announced the completion of a ‘working draft’ of human genome sequence at a press conference in June 2000.

  12. Some of these advisors served on officially constituted advisory committees and task forces, and some directed major genome laboratories.

  13. The paper appeared in Science and in an accompanying news article, genome project leaders described it as the ‘centerpiece’ of the 5-year plan (Roberts, 1989a).

  14. These included genetic linkage maps, macrorestriction maps, radiation hybrid maps and contig maps, each of which offered a different view of the genome. For an account of some of these mapping methods and their emergence in the community of researchers studying the worm C. elegans, see de Chadarevian (2004).

  15. An STS could be fully represented in terms of two short DNA sequences (each a few dozen base pairs in length) known as ‘PCR primers’, along with a bit of data on PCR assay conditions, and given this information, a molecular biology laboratory could test a DNA sample for the presence of this STS. (Olson et al, 1989). To use an STS-based map to establish the location of a random DNA fragment on the genome, one only needed written inscriptions. An oligonucleotide synthesizer could translate the text of the STS landmarks into physical primers, that is, the corresponding DNA molecules. Laboratories could manufacture their own primers or buy them from companies that produced them as a commercial product. Once converted into molecules, the primers could be loaded into a PCR machine, along with the sample to be tested, and run, yielding a positive or negative result in a few hours. For an account of the development of PCR, see Rabinow (1996).

  16. Even if people intended to share clones quickly, doing so raised the logistical problems associated with packing and shipping biomaterials. With increasing scale, the logistical complexities were expected to grow much worse, perhaps requiring the establishment of a repository capable of distributing hundreds of thousands of clones (National Research Council, 1988, pp. 81–82). The authors of the STS proposal were also worried about the long-term stability of clones, which, after all, were living cells known to sometimes spontaneously drop or rearrange the DNA of interest.

  17. (Fieldnotes from genome laboratory, 1992).

  18. In contrast, the HGMP lacked a metric for evaluation; a count of genes mapped, for example, was not used (Balmer et al, 1998).

  19. The production of sequence could be measured in base pairs completed, which genome researchers tended to regard as the ‘natural’ unit of production. However, mapping productivity was harder to conceptualize and measure. Yet, making mapping measurable was more critical early in the project, because that was the key goal for the first 5 years.

  20. See, NCHGR briefing book for Meeting of the NIH–DOE Joint Subcommittee and the Eighth Meeting of the NIH Program Advisory Committee on the Human Genome, 7 and 8 December 1992, Bethesda, Maryland, Tab G, Attachment 2.

  21. See Keating et al (1999) on laboratory automation practices.

  22. They also developed substantial capacity in the analysis of sequence data and conducted and typically published preliminary analyses of the data that they produced.

  23. See Hilgartner (2011) for an account of the period immediately after Celera announced its plan; see also Glasner and Rothman (2004).

References

  • Atkinson, P., Batchelor, C. and Parsons, E. (1998) Trajectories of collaboration and competition in a medical discovery. Science, Technology & Human Values 23 (3): 259–284.

    Article  Google Scholar 

  • Balmer, B. (1996) Managing mapping in the Human Genome Project. Social Studies of Science 26 (3): 531–573.

    Article  Google Scholar 

  • Balmer, B. (1998) Transitional science and the human genome mapping project resource center. In: P. Glasner and H. Rothman (eds.) Genetic Imaginations: Ethical, Legal and Social Issues in Human Genome Research. Aldershot, UK: Ashgate, pp. 7–19.

    Google Scholar 

  • Balmer, B., Davidson, R. and Morris, N. (1998) Funding research through directed programmes: AIDS and the Human Genome Project in the UK. Science and Public Policy 25 (3): 185–194.

    Google Scholar 

  • Cantor, C. (1990) Orchestrating the Human Genome Project. Science 248 (4951): 49–51.

    Article  Google Scholar 

  • Collins, F.S. (1995) Ahead of schedule and under budget: The Genome Project passes its fifth birthday. Proceedings of the National Academy of Sciences of the United States of America 92 (24): 10821–10823.

    Article  Google Scholar 

  • Collins, F.S., Green, E.D., Guttmacher, A.D. and Guyer, M.S. (2003) A vision for the future of genomics research: A blueprint for the genomic era. Nature 422 (6934): 835–847.

    Article  Google Scholar 

  • Collins, F.S., Morgan, M. and Patrinos, A. (2003) The Human Genome Project: Lessons from large-scale biology. Science 300 (5617): 286–290.

    Article  Google Scholar 

  • Cook-Deegan, R. (1994) The Gene Wars. New York: W.W. Norton.

    Google Scholar 

  • de Chadarevian, S. (2004) Mapping the worm’s genome: Tools, networks, patronage. In: J.-P. Gaudilliere and H.-J. Rheinberger (eds.) From Molecular Genetics to Genomics: The Mapping Cultures of Twentieth-Century Genetics. New York: Routledge, pp. 95-110.

    Google Scholar 

  • Fujimura, J.H. (1987) Constructing ‘do-able’ problems in cancer research: Articulating alignment. Social Studies of Science 17 (2): 257–293.

    Article  Google Scholar 

  • Gilbert, W. (1992) A vision of the grail. In: D. Kevles and L. Hood (eds.) The Code of Codes: Scientific and Social Issues in the Human Genome Project. Cambridge, MA: Harvard University Press.

    Google Scholar 

  • Glasner, P. and Rothman, H. (2004) Splicing Life: The New Genetics and Society. England: Ashgate.

    Google Scholar 

  • Goffman, E. (1974) Frame Analysis. New York: Basic Books.

    Google Scholar 

  • Hilgartner, S. (1997) Access to data and intellectual property: Scientific exchange in genome research. In: National Academy of Sciences (ed.) Intellectual Property and Research Tools in Molecular Biology: Report of a Workshop. Washington, DC: National Academy Press, pp. 28–39.

    Google Scholar 

  • Hilgartner, S. (1998) Data access policy in genome research. In: A. Thackray (ed.) Private Science: Biotechnology and the Rise of the Molecular Sciences. Philadelphia, PA: University of Pennsylvania Press, pp. 202–218.

    Google Scholar 

  • Hilgartner, S. (2004) Making maps and making social order: Governing American genome centers, 1988–1993. In: J.-P. Gaudillière and H.-J. Rheinberger (eds.) From Genetics to Genomics: The Mapping Cultures of Twentieth-Century Genetics. New York: Routledge, pp. 113-128.

    Google Scholar 

  • Hilgartner, S. (2011) Staging high-visibility science: Media orientation in genome research. In: S. Rödder, M. Franzen and P. Weingart (eds.) The Sciences’ Media Connection – Public Communication and its Repercussions. Sociology of the Sciences Yearbook. Dordrecht, the Netherlands: Springer, pp. 152–175.

    Google Scholar 

  • Hilgartner, S. (2012) Novel constitutions? New regimes of openness in synthetic biology. BioSocieties 7 (2): 188–207.

    Article  Google Scholar 

  • Hohfeld, W.N. (1920) Fundamental Legal Conceptions as Applied in Judicial Reasoning and Other Legal Essays. New Haven, CT: Yale University Press, http://openlibrary.org/books/OL7209659M/Fundamental_legal_conceptions_as_applied_in_judicial_reasoning, accessed 25 September 2013.

  • Hood, L. (1992) Biology and medicine the twenty-first century. In: D. Kevles and L. Hood (eds.) The Code of Codes: Scientific and Social Issues in the Human Genome Project. Cambridge, MA: Harvard University Press.

    Google Scholar 

  • International HapMap Consortium (2003) International HapMap Project. Nature 426 (6968): 789–796.

  • Jasanoff, S. (ed.) (2004) States of Knowledge: The Co-production of Science and Social Order. New York: Routledge.

    Book  Google Scholar 

  • Jasanoff, S. and Kim, S.-H. (2009) Containing the atom: Sociotechnical imaginaries and nuclear power in the United States and South Korea. Minerva 47 (2): 119–146.

    Article  Google Scholar 

  • Joly, P.B. and Mangematin, V. (1998) How long is co-operation in genomics sustainable? In: P. Wheale and R. Von Schomberg (eds.) The Social Management of Genetic Engineering, Aldershot. UK: Ashgate, pp. 77-90.

    Google Scholar 

  • Kaufmann, A. (2004) Mapping the human genome at Généthon laboratory. In: J.-P. Gaudillière and H.-J. Rheinberger (eds.) From Genetics to Genomics: The Mapping Cultures of Twentieth-Century Genetics. New York: Routledge, pp. 129–157.

    Chapter  Google Scholar 

  • Keating, P., Limoges, C. and Cambrosio, A. (1999) The automated laboratory: Generation and replication of work in molecular genetics. In: M. Fortun and E. Mendelsohn (eds.) The Practices of Human Genetics. Dordrecht, the Netherlands: Kluwer, pp. 125–142.

    Chapter  Google Scholar 

  • Knorr Cetina, K. (1998) Epistemic Cultures: How the Sciences Make Knowledge. Cambridge, MA: Harvard University Press.

    Google Scholar 

  • Latour, B. (1986) Visualization and cognition: Drawing things together. Knowledge & Cognition 14 (4): 1–40.

    Google Scholar 

  • National Center for Human Genome Research (1989) Human Genome Program Center Grants (P30, P50). NIH Guide for Grants and Contracts 18 (36): 8–12.

  • National Center for Human Genome Research (NCHGR) (1992) Genome Report Card. Bethesda, MD: National Institutes of Health.

  • National Institutes of Health and Department of Energy (NIH–DOE) (1990) Understanding our genetic inheritance. The US Human Genome Project: The First Five Years: Fiscal Years 19911995. Washington DC: NIH and DOE. NIH Publication no. 90-1590; DOE/ER-0452 P.

  • National Research Council (1988) Mapping and Sequencing the Human Genome. Washington DC: National Academy Press.

  • National Research Council (2003) Large-Scale Biomedical Science: Exploring Strategies for Future Research. Committee on Large-Scale Science and Cancer Research. Washington DC: National Academies Press.

  • Office of Human Genome Research (1989) Human Genome Program Center Grants (P 30). NIH Guide for Grants and Contracts 18 (25): 7–10.

  • Olson, M., Hood, L., Cantor, C. and Botstein, D. (1989) A common language for physical mapping of the human genome. Science 245 (4925): 1434–1435.

    Article  Google Scholar 

  • Rabeharisoa, V. and Callon, M. (2004) Patients and scientists in french muscular dystrophy research. In: S. Jasanoff (ed.) States of Knowledge: The Co-production of Science and Social Order. New York: Routledge, pp. 142–160.

    Google Scholar 

  • Rabinow, P. (1996) Making PCR: A Story of Biotechnology. Chicago, IL: University Of Chicago Press.

    Google Scholar 

  • Rabinow, P. (1999) French DNA: Trouble in Purgatory. Chicago, IL: University of Chicago Press.

    Google Scholar 

  • Reardon, J. (2011) Human population genomics and the dilemma of difference. In: S. Jasanoff (ed.) Reframing Rights: Bioconstitutionalism in the Genetic Age. Cambridge, MA: MIT Press, pp. 217–238.

    Chapter  Google Scholar 

  • Roberts, L. (1988) Cantor to head LBL genome center. Science 240 (4857): 1266.

    Article  Google Scholar 

  • Roberts, L. (1989a) New game plan for genome mapping. Science 245 (4925): 1438–1440.

    Article  Google Scholar 

  • Roberts, L. (1989b) Plan for genome centers sparks a controversy. Science 246 (4927): 204–205.

    Article  Google Scholar 

  • Stevens, H. (2011) On the means of bio-production: Bioinformatics and how to make knowledge in a high-throughput genomics laboratory. BioSocieties 6 (2): 217–142.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Rights and permissions

Reprints and permissions

About this article

Cite this article

Hilgartner, S. Constituting large-scale biology: Building a regime of governance in the early years of the Human Genome Project. BioSocieties 8, 397–416 (2013). https://doi.org/10.1057/biosoc.2013.31

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1057/biosoc.2013.31

Keywords

Navigation