Managing Mapping in the Human Genome Project

Social Studies of Science

Volumn 26, Issue 3, 1996, Pages 531-573

  Balmer, Brian ^a  

^a NONE

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EID: 0030514898     PISSN: 03063127     EISSN: None     Source Type: Journal    
DOI: 10.1177/030631296026003002     Document Type: Article

References (59)

1. Michael Crichton, Jurassic Park (London: Arrow, 1991), 125.
2. Walter Gilbert, cited in Office of Technology Assessment, Mapping our Genes. Genome Projects: How Big How Fast? (Washington, DC: US Government Printing Office, 1988), 126; and Martin Rechsteiner cited in Leslie Roberts, 'Genome Backlash Going Full Force', Science, Vol. 248 (18 May 1990), 804.
3. Walter Gilbert, cited in Office of Technology Assessment, Mapping our Genes. Genome Projects: How Big How Fast? (Washington, DC: US Government Printing Office, 1988), 126; and Martin Rechsteiner cited in Leslie Roberts, 'Genome Backlash Going Full Force', Science, Vol. 248 (18 May 1990), 804.
4. It is important to distinguish between the global project (often called the 'Human Genome Project') and the British genome project (which was officially the 'Human Genome Mapping Project'). For the sake of consistency, in the text I shall use 'HGMP' to refer to the UK project, and 'project' for most other purposes (either referring to the global project, or the nascent UK project before it officially became the HGMP).
5. Andrew M. Barry, The Science of Science: Programmes of British Space Research (unpublished DPhil thesis. Science Policy Research Unit, University of Sussex, 1988), 229-31.
6. Ibid., 229-31.
7. See Evelyn Fox Keller, Secrets of Life, Secrets of Death: Essays on Language, Gender and Science (London: Routledge, 1992), 83-89.
8. See Andrew Webster, Science, Technology and Society: New Directions (London & Basingstoke, Hants.: Macmillan, 1991), 38-41.
9. Thomas F. Gieryn, 'Boundaries of Science', in Sheila Jasanoff, Gerald Markle, James C. Peterson and Trevor Pinch (eds), Handbook of Science and Technology Studies (Thousand Oaks, CA, London & New Delhi: Sage Publications, 1994), 393-443; Jasanoff, 'Contested Boundaries in Policy-Relevant Science', Social Studies of Science, Vol. 17 (1987), 195-230.
10. Thomas F. Gieryn, 'Boundaries of Science', in Sheila Jasanoff, Gerald Markle, James C. Peterson and Trevor Pinch (eds), Handbook of Science and Technology Studies (Thousand Oaks, CA, London & New Delhi: Sage Publications, 1994), 393-443; Jasanoff, 'Contested Boundaries in Policy-Relevant Science', Social Studies of Science, Vol. 17 (1987), 195-230.
11. Karin D. Knorr-Cetina, 'Scientific Communities or Transepistemic Arenas of Research? A Critique of Quasi-Economic Models of Science', Social Studies of Science, Vol. 12 (1982), 101-30; Michel Callon, John Law and Arie Rip (eds), Mapping the Dynamics of Science and Technology (London & Basingstoke, Hants: Macmillan, 1986); Bruno Latour, Science in Action: How to Follow Scientists and Engineers Through Society (Milton Keynes, Bucks.: Open University Press, 1987).
12. Karin D. Knorr-Cetina, 'Scientific Communities or Transepistemic Arenas of Research? A Critique of Quasi-Economic Models of Science', Social Studies of Science, Vol. 12 (1982), 101-30; Michel Callon, John Law and Arie Rip (eds), Mapping the Dynamics of Science and Technology (London & Basingstoke, Hants: Macmillan, 1986); Bruno Latour, Science in Action: How to Follow Scientists and Engineers Through Society (Milton Keynes, Bucks.: Open University Press, 1987).
13. Karin D. Knorr-Cetina, 'Scientific Communities or Transepistemic Arenas of Research? A Critique of Quasi-Economic Models of Science', Social Studies of Science, Vol. 12 (1982), 101-30; Michel Callon, John Law and Arie Rip (eds), Mapping the Dynamics of Science and Technology (London & Basingstoke, Hants: Macmillan, 1986); Bruno Latour, Science in Action: How to Follow Scientists and Engineers Through Society (Milton Keynes, Bucks.: Open University Press, 1987).
14. Arie Rip, 'Contextual Transformations in Contemporary Science', in Andrew Jamison (ed.), Keeping Science Straight: A Critical Look at the Assessment of Science and Technology (Gothenburg: Department of Theory of Science and Centre for Interdisciplinary Studies, University of Gothenburg, Report No. 156, 1988), 59-85.
15. Rip argues that each level has a 'cycle of credibility' akin to that proposed for individual scientists by Latour and Woolgar: see Bruno Latour and Steve Woolgar, Laboratory Life: The Social Construction of Scientific Facts (Beverley Hills, CA & London: Sage Publications, 1979), 181-230.
16. Elihu M. Gerson, 'Scientific Work and Social Worlds', Knowledge: Creation, Diffusion, Utilization, Vol. 4, No. 3 (March 1983), 357-77; Anselm Strauss, 'A Social World Perspective', Studies in Symbolic Interaction, Vol. 1 (1978), 119-28; Joan H. Fujimura, 'The Molecular Biological Bandwagon in Cancer Research: Where Social Worlds Meet', Social Problems, Vol. 35, No. 3 (June 1988), 261-83; Adele E. Clarke, 'A Social Worlds Research Adventure: The Case of Reproductive Science', in Susan E. Cozzens and T.F. Gieryn (eds), Theories of Science in Society (Bloomington, IN: Indiana University Press, 1990), 15-42; Clarke, 'Social Worlds/Arenas Theory as Organizational Theory', in David Maines (ed.), Social Organization and Social Process: Essays in Honor of Anselm Strauss (New York: Aldine de Gruyter, 1991), 119-58.
17. Elihu M. Gerson, 'Scientific Work and Social Worlds', Knowledge: Creation, Diffusion, Utilization, Vol. 4, No. 3 (March 1983), 357-77; Anselm Strauss, 'A Social World Perspective', Studies in Symbolic Interaction, Vol. 1 (1978), 119-28; Joan H. Fujimura, 'The Molecular Biological Bandwagon in Cancer Research: Where Social Worlds Meet', Social Problems, Vol. 35, No. 3 (June 1988), 261-83; Adele E. Clarke, 'A Social Worlds Research Adventure: The Case of Reproductive Science', in Susan E. Cozzens and T.F. Gieryn (eds), Theories of Science in Society (Bloomington, IN: Indiana University Press, 1990), 15-42; Clarke, 'Social Worlds/Arenas Theory as Organizational Theory', in David Maines (ed.), Social Organization and Social Process: Essays in Honor of Anselm Strauss (New York: Aldine de Gruyter, 1991), 119-58.
18. Elihu M. Gerson, 'Scientific Work and Social Worlds', Knowledge: Creation, Diffusion, Utilization, Vol. 4, No. 3 (March 1983), 357-77; Anselm Strauss, 'A Social World Perspective', Studies in Symbolic Interaction, Vol. 1 (1978), 119-28; Joan H. Fujimura, 'The Molecular Biological Bandwagon in Cancer Research: Where Social Worlds Meet', Social Problems, Vol. 35, No. 3 (June 1988), 261-83; Adele E. Clarke, 'A Social Worlds Research Adventure: The Case of Reproductive Science', in Susan E. Cozzens and T.F. Gieryn (eds), Theories of Science in Society (Bloomington, IN: Indiana University Press, 1990), 15-42; Clarke, 'Social Worlds/Arenas Theory as Organizational Theory', in David Maines (ed.), Social Organization and Social Process: Essays in Honor of Anselm Strauss (New York: Aldine de Gruyter, 1991), 119-58.
19. Elihu M. Gerson, 'Scientific Work and Social Worlds', Knowledge: Creation, Diffusion, Utilization, Vol. 4, No. 3 (March 1983), 357-77; Anselm Strauss, 'A Social World Perspective', Studies in Symbolic Interaction, Vol. 1 (1978), 119-28; Joan H. Fujimura, 'The Molecular Biological Bandwagon in Cancer Research: Where Social Worlds Meet', Social Problems, Vol. 35, No. 3 (June 1988), 261-83; Adele E. Clarke, 'A Social Worlds Research Adventure: The Case of Reproductive Science', in Susan E. Cozzens and T.F. Gieryn (eds), Theories of Science in Society (Bloomington, IN: Indiana University Press, 1990), 15-42; Clarke, 'Social Worlds/Arenas Theory as Organizational Theory', in David Maines (ed.), Social Organization and Social Process: Essays in Honor of Anselm Strauss (New York: Aldine de Gruyter, 1991), 119-58.
20. Elihu M. Gerson, 'Scientific Work and Social Worlds', Knowledge: Creation, Diffusion, Utilization, Vol. 4, No. 3 (March 1983), 357-77; Anselm Strauss, 'A Social World Perspective', Studies in Symbolic Interaction, Vol. 1 (1978), 119-28; Joan H. Fujimura, 'The Molecular Biological Bandwagon in Cancer Research: Where Social Worlds Meet', Social Problems, Vol. 35, No. 3 (June 1988), 261-83; Adele E. Clarke, 'A Social Worlds Research Adventure: The Case of Reproductive Science', in Susan E. Cozzens and T.F. Gieryn (eds), Theories of Science in Society (Bloomington, IN: Indiana University Press, 1990), 15-42; Clarke, 'Social Worlds/Arenas Theory as Organizational Theory', in David Maines (ed.), Social Organization and Social Process: Essays in Honor of Anselm Strauss (New York: Aldine de Gruyter, 1991), 119-58.
21. Pim Fenger, 'Research Councils: Buffers Under Cross Pressures', Higher Education Manaement, Vol. 4, No. 2 (July 1992), 245-55.
22. Stephen P. Turner, 'Forms of Patronage', in Cozzens & Gieryn (eds), op. cit. note 11, 185-211.
23. John Ziman, An Introduction to Science Studies: The Philosophical and Social Aspects of Science and Technology (Cambridge: Cambridge University Press, 1987), 159-72.
24. Aant Elzinga, 'Research, Bureaucracy and the Drift of Epistemic Criteria', in Bjorn Wittrock and Elzinga (eds), The University Research System: The Public Policies of the Home of Scientists (Stockholm: Almqvist & Wiksell International, 1985), 191-220; Elzinga, 'The Consequences of Evaluation for Academic Research', Science Studies, No.1 (1988), 5-14.
25. Aant Elzinga, 'Research, Bureaucracy and the Drift of Epistemic Criteria', in Bjorn Wittrock and Elzinga (eds), The University Research System: The Public Policies of the Home of Scientists (Stockholm: Almqvist & Wiksell International, 1985), 191-220; Elzinga, 'The Consequences of Evaluation for Academic Research', Science Studies, No.1 (1988), 5-14.
26. Ian Hacking, 'Styles of Scientific Reasoning', in John Rajchman and Cornel West (eds), Post-Analytic Philosophy (New York: Columbia University Press, 1985), 145-65.
27. In this sense a 'style' plays a very similar coordinating role to the notion of a 'boundary object', as used by Star and her colleagues. Styles do not seem to have as much plasticity across social worlds as boundary objects: see Susan Leigh Star, 'The Structure of Ill-Structured Solutions: Boundary Objects and Heterogeneous Distributed Problem Solving', in Les Gasser and Michael N. Huhns (eds), Distributed Artificial Intelligence, Vol. 2 (London: Pitman, 1989), 37-54; Star and James R. Griesemer, 'Institutional Ecology, "Translations" and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39', Social Studies of Science, Vol. 19 (1989), 387-420. Styles also play an analogous role to 'Sequence Tagged Sites' which, in the US HGP, simultaneously aided the management of science, access to scientific data and the evolution of technology: see Stephen Hilgartner, 'The Human Genome Project', in Jasanoff et al. (eds), op. cit. note 7, 302-15.
28. In this sense a 'style' plays a very similar coordinating role to the notion of a 'boundary object', as used by Star and her colleagues. Styles do not seem to have as much plasticity across social worlds as boundary objects: see Susan Leigh Star, 'The Structure of Ill-Structured Solutions: Boundary Objects and Heterogeneous Distributed Problem Solving', in Les Gasser and Michael N. Huhns (eds), Distributed Artificial Intelligence, Vol. 2 (London: Pitman, 1989), 37-54; Star and James R. Griesemer, 'Institutional Ecology, "Translations" and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39', Social Studies of Science, Vol. 19 (1989), 387-420. Styles also play an analogous role to 'Sequence Tagged Sites' which, in the US HGP, simultaneously aided the management of science, access to scientific data and the evolution of technology: see Stephen Hilgartner, 'The Human Genome Project', in Jasanoff et al. (eds), op. cit. note 7, 302-15.
29. In this sense a 'style' plays a very similar coordinating role to the notion of a 'boundary object', as used by Star and her colleagues. Styles do not seem to have as much plasticity across social worlds as boundary objects: see Susan Leigh Star, 'The Structure of Ill-Structured Solutions: Boundary Objects and Heterogeneous Distributed Problem Solving', in Les Gasser and Michael N. Huhns (eds), Distributed Artificial Intelligence, Vol. 2 (London: Pitman, 1989), 37-54; Star and James R. Griesemer, 'Institutional Ecology, "Translations" and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39', Social Studies of Science, Vol. 19 (1989), 387-420. Styles also play an analogous role to 'Sequence Tagged Sites' which, in the US HGP, simultaneously aided the management of science, access to scientific data and the evolution of technology: see Stephen Hilgartner, 'The Human Genome Project', in Jasanoff et al. (eds), op. cit. note 7, 302-15.
30. Peter F.R. Little, 'Gene Mapping and the Human Genome Mapping Project', Current Opinion in Cell Biology, Vol. 2 (1990), 478-84.
31. For a summary of the major issues, see Daniel J. Kevles and Leroy Hood (eds), The Code of Codes: Scientific and Social Issues in the Human Genome Project (Cambridge, MA & London: Harvard University Press, 1992); and the special edition of Issues In Science and Technology, Vol. 3, No. 3 (Spring 1987).
32. For a summary of the major issues, see Daniel J. Kevles and Leroy Hood (eds), The Code of Codes: Scientific and Social Issues in the Human Genome Project (Cambridge, MA & London: Harvard University Press, 1992); and the special edition of Issues In Science and Technology, Vol. 3, No. 3 (Spring 1987).
33. Robert M. Cook-Deagan, 'The Human Genome Project: The Formation of Federal Policies in the United States, 1986-1990', in K.E. Hanna (ed.), Biomedical Politics, Report of the Committee to Study Biomedical Decision Making, Division of Health Sciences Policy, Institute of Medicine (Washington, DC: National Academy Press, 1991), 99-168.
34. Diane J. McLaren, Human Genome Research: A Review of European and International Contributions (London: Medical Research Council, 1991). An account of the unsuccessful attempts by Australian geneticists to establish a genome project can be found in Brian Balmer, 'Gene Mapping and Policy Making: Australia and the Human Genome Project', Prometheus, Vol. 12 (1994), 3-18.
35. Diane J. McLaren, Human Genome Research: A Review of European and International Contributions (London: Medical Research Council, 1991). An account of the unsuccessful attempts by Australian geneticists to establish a genome project can be found in Brian Balmer, 'Gene Mapping and Policy Making: Australia and the Human Genome Project', Prometheus, Vol. 12 (1994), 3-18.
36. HUGO has been criticized by many commentators for failing in its role of coordinator: see Christine McGourty, 'A New Direction for HUGO', Nature, Vol. 342 (14 December 1989), 724; David Swinbanks, 'No Special Treatment for HUGO', Nature, Vol. 343 (18 January 1990), 195; Christopher Anderson and Peter Aldhous, 'Still Room for HUGO?', Nature, Vol. 355 (2 January 1992), 4-5.
37. HUGO has been criticized by many commentators for failing in its role of coordinator: see Christine McGourty, 'A New Direction for HUGO', Nature, Vol. 342 (14 December 1989), 724; David Swinbanks, 'No Special Treatment for HUGO', Nature, Vol. 343 (18 January 1990), 195; Christopher Anderson and Peter Aldhous, 'Still Room for HUGO?', Nature, Vol. 355 (2 January 1992), 4-5.
38. HUGO has been criticized by many commentators for failing in its role of coordinator: see Christine McGourty, 'A New Direction for HUGO', Nature, Vol. 342 (14 December 1989), 724; David Swinbanks, 'No Special Treatment for HUGO', Nature, Vol. 343 (18 January 1990), 195; Christopher Anderson and Peter Aldhous, 'Still Room for HUGO?', Nature, Vol. 355 (2 January 1992), 4-5.
39. See J. Alwen, 'United Kingdom Human Genome Mapping Project: Background, Development, Components, Coordination and Management, and International Links of the Project', Genomics, Vol. 6 (1990), 386-88; John Galloway, 'Britain and the Human Genome', New Scientist (28 July 1990), 41-46; Tom Wilkie, Perilous Knowledge: The Human Genome Project and its Implications (London: Faber & Faber, 1994), 87-90; B. Balmer, Mutations in the Research System? The Human Genome Mapping Project as Science Policy (unpublished D Phil thesis, Science Policy Research Unit, University of Sussex, 1993).
40. See J. Alwen, 'United Kingdom Human Genome Mapping Project: Background, Development, Components, Coordination and Management, and International Links of the Project', Genomics, Vol. 6 (1990), 386-88; John Galloway, 'Britain and the Human Genome', New Scientist (28 July 1990), 41-46; Tom Wilkie, Perilous Knowledge: The Human Genome Project and its Implications (London: Faber & Faber, 1994), 87-90; B. Balmer, Mutations in the Research System? The Human Genome Mapping Project as Science Policy (unpublished D Phil thesis, Science Policy Research Unit, University of Sussex, 1993).
41. See J. Alwen, 'United Kingdom Human Genome Mapping Project: Background, Development, Components, Coordination and Management, and International Links of the Project', Genomics, Vol. 6 (1990), 386-88; John Galloway, 'Britain and the Human Genome', New Scientist (28 July 1990), 41-46; Tom Wilkie, Perilous Knowledge: The Human Genome Project and its Implications (London: Faber & Faber, 1994), 87-90; B. Balmer, Mutations in the Research System? The Human Genome Mapping Project as Science Policy (unpublished D Phil thesis, Science Policy Research Unit, University of Sussex, 1993).
42. See J. Alwen, 'United Kingdom Human Genome Mapping Project: Background, Development, Components, Coordination and Management, and International Links of the Project', Genomics, Vol. 6 (1990), 386-88; John Galloway, 'Britain and the Human Genome', New Scientist (28 July 1990), 41-46; Tom Wilkie, Perilous Knowledge: The Human Genome Project and its Implications (London: Faber & Faber, 1994), 87-90; B. Balmer, Mutations in the Research System? The Human Genome Mapping Project as Science Policy (unpublished D Phil thesis, Science Policy Research Unit, University of Sussex, 1993).
43. See Catherine M. Cunningham and Robin H. Nicholson, 'Central Government Organization and Policy-Making for Science and Technology Since 1982', in Cunningham, Nicholson and Philip Gummett (eds), Science and Technology in the United Kingdom (Harlow: Longman, 1991), 27-43.
44. A more detailed account of this history can be found in Balmer, op. cit. note 23.
45. Medical Research Council, MRC Review of the UK Human Genome Mapping Project, Project Manager's Report (London: MRC, September 1992), 3.
46. The Resource Centre undertook much of the systematic work necessary to generate materials, such as DNA probes and clones, on a scale sufficient to meet the needs of researchers who were involved in mapping work. The Centre also ran the computing services which increasingly became necessary to store and process the vast amounts of data created by the initiative. The Resource Centre was an extremely important aspect of the UK Project. Its role is discussed at length in B. Balmer, 'Transitional Science and the Human Genome Mapping Project Resource Centre', The Genetic Engineer and Biotechnologist, Vol. 15, No. 2/3 (1995), 89-97.
47. The Steering Group was a later addition to the gamut of committees overseeing the HGMP. According to the Project Manager, it was established as a peer-review style committee in order to provide some degree of credibility for the novel idea of a centre (Project Manager, personal communication, March 1995).
48. Called G-String for the first three issues.
49. At the behest of three reviewers, further methodological details are included in an Appendix at the end of this paper; more details and discussion can be found in Balmer, op. cit. note 23.
50. Sydney Brenner, 'The Human Genome: the Nature of the Enterprise', in Ciba Foundation, Human Genetic Information: Science, Law and Ethics (Chichester, Hants.: Wiley, 1990), 6-17, at 6.
51. There were 19 comments of this nature from 13 interviewees in the UK fieldwork.
52. Interview, DPC member/HGMP grant-holder.
53. Quote from a HGMP grant-holder. Similar points were made by 13 interviewees (not the same 13 who made the comments about the boring nature of the work).
54. Interview, HGMP grant-holder.
55. Thomas S. Kuhn, The Structure of Scientific Revolutions (Chicago, IL: The University of Chicago Press, 2nd edn, 1970), 10-22.
56. Even for a strict philosophical realist, the world can be organized in a multitude of ways which will make sense relative to the interests of the investigator. This point has been argued lucidly by Ian Hacking in 'Weapons Research and the Form of Scientific Knowledge', Canadian Journal of Philosophy, Supplementary Vol. 12 (1987), 237-60. For a detailed philosophical exposition of a similar point with respect to biological classification see Jonathan Dupré, The Disorder of Things: Metaphysical Foundations of the Disunity of Science (Cambridge, MA: Harvard University Press, 1993), 34-36.
57. Even for a strict philosophical realist, the world can be organized in a multitude of ways which will make sense relative to the interests of the investigator. This point has been argued lucidly by Ian Hacking in 'Weapons Research and the Form of Scientific Knowledge', Canadian Journal of Philosophy, Supplementary Vol. 12 (1987), 237-60. For a detailed philosophical exposition of a similar point with respect to biological classification see Jonathan Dupré, The Disorder of Things: Metaphysical Foundations of the Disunity of Science (Cambridge, MA: Harvard University Press, 1993), 34-36.
58. Keith Vernon, 'Desperately Seeking Status: Evolutionary Systematics and the Taxonomists' Search for Respectability 1940-60', British Journal for the History of Science, Vol. 26 (1993), 207-27. 'Biologically minded taxonomists' is a quote from Ernst Mayr et al., Methods and Principles of Systematic Zoology, (1953), cited in Vernon.
59. Keith Vernon, 'Desperately Seeking Status: Evolutionary Systematics and the Taxonomists' Search for Respectability 1940-60', British Journal for the History of Science, Vol. 26 (1993), 207-27. 'Biologically minded taxonomists' is a quote from Ernst Mayr et al., Methods and Principles of Systematic Zoology, (1953), cited in Vernon.