Advertisement

BioSocieties

, Volume 8, Issue 4, pp 397–416 | Cite as

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

  • Stephen Hilgartner
Original Article

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.

Keywords

genomics Human Genome Project governance of science coproduction Big Science history of biology 

References

  1. 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.CrossRefGoogle Scholar
  2. Balmer, B. (1996) Managing mapping in the Human Genome Project. Social Studies of Science 26 (3): 531–573.CrossRefGoogle Scholar
  3. 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
  4. 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
  5. Cantor, C. (1990) Orchestrating the Human Genome Project. Science 248 (4951): 49–51.CrossRefGoogle Scholar
  6. 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.CrossRefGoogle Scholar
  7. 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.CrossRefGoogle Scholar
  8. Collins, F.S., Morgan, M. and Patrinos, A. (2003) The Human Genome Project: Lessons from large-scale biology. Science 300 (5617): 286–290.CrossRefGoogle Scholar
  9. Cook-Deegan, R. (1994) The Gene Wars. New York: W.W. Norton.Google Scholar
  10. 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
  11. Fujimura, J.H. (1987) Constructing ‘do-able’ problems in cancer research: Articulating alignment. Social Studies of Science 17 (2): 257–293.CrossRefGoogle Scholar
  12. 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
  13. Glasner, P. and Rothman, H. (2004) Splicing Life: The New Genetics and Society. England: Ashgate.Google Scholar
  14. Goffman, E. (1974) Frame Analysis. New York: Basic Books.Google Scholar
  15. 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
  16. 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
  17. 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
  18. 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
  19. Hilgartner, S. (2012) Novel constitutions? New regimes of openness in synthetic biology. BioSocieties 7 (2): 188–207.CrossRefGoogle Scholar
  20. 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.
  21. 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
  22. International HapMap Consortium (2003) International HapMap Project. Nature 426 (6968): 789–796.Google Scholar
  23. Jasanoff, S. (ed.) (2004) States of Knowledge: The Co-production of Science and Social Order. New York: Routledge.CrossRefGoogle Scholar
  24. 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.CrossRefGoogle Scholar
  25. 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
  26. 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.CrossRefGoogle Scholar
  27. 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.CrossRefGoogle Scholar
  28. Knorr Cetina, K. (1998) Epistemic Cultures: How the Sciences Make Knowledge. Cambridge, MA: Harvard University Press.Google Scholar
  29. Latour, B. (1986) Visualization and cognition: Drawing things together. Knowledge & Cognition 14 (4): 1–40.Google Scholar
  30. National Center for Human Genome Research (1989) Human Genome Program Center Grants (P30, P50). NIH Guide for Grants and Contracts 18 (36): 8–12.Google Scholar
  31. National Center for Human Genome Research (NCHGR) (1992) Genome Report Card. Bethesda, MD: National Institutes of Health.Google Scholar
  32. 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.Google Scholar
  33. National Research Council (1988) Mapping and Sequencing the Human Genome. Washington DC: National Academy Press.Google Scholar
  34. 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.Google Scholar
  35. Office of Human Genome Research (1989) Human Genome Program Center Grants (P 30). NIH Guide for Grants and Contracts 18 (25): 7–10.Google Scholar
  36. 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.CrossRefGoogle Scholar
  37. 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
  38. Rabinow, P. (1996) Making PCR: A Story of Biotechnology. Chicago, IL: University Of Chicago Press.Google Scholar
  39. Rabinow, P. (1999) French DNA: Trouble in Purgatory. Chicago, IL: University of Chicago Press.Google Scholar
  40. 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.CrossRefGoogle Scholar
  41. Roberts, L. (1988) Cantor to head LBL genome center. Science 240 (4857): 1266.CrossRefGoogle Scholar
  42. Roberts, L. (1989a) New game plan for genome mapping. Science 245 (4925): 1438–1440.CrossRefGoogle Scholar
  43. Roberts, L. (1989b) Plan for genome centers sparks a controversy. Science 246 (4927): 204–205.CrossRefGoogle Scholar
  44. 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.CrossRefGoogle Scholar

Copyright information

© The London School of Economics and Political Science 2013

Authors and Affiliations

  • Stephen Hilgartner
    • 1
  1. 1.Department of Science & Technology StudiesCornell UniversityIthacaUSA

Personalised recommendations