Diagnostic Knowledge in the Genetic Economy and Commerce

  • Michela Betta
Part of the International Library of Ethics, Law, and the New Medicine book series (LIME, volume 30)

On 5 December 2002 the Australian Senate passed the Research Involving Embryos and Prohibition of Human Cloning Bill 2002, which regulates stem cell research. The bill introduces some restrictions with regard to the use of stored frozen embryos, which are not destined to be implanted. The bill states that only frozen embryos created before April 2002 can be used for research purposes, provided that the individuals whom these embryos relate to give their consent. The alternative to this restriction would have been no research at all, and this would have happened if the law had been stopped. The Australian scientists regarded the new law as a compromise that would undoubtedly slow down research, but not entirely stop it.

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Notes

  1. 1.
    Finkel, E. 2005. Stem Cells: Controversy at the Frontiers of Science. Sydney: ABC Books, 101.Google Scholar
  2. 2.
    Betta, M. and Clulow, V. 2005. Healthcare management—training and education in the genomic era. Journal of Health and Human Services Administration 27 (1): 465–500.PubMedGoogle Scholar
  3. 3.
    Finkel, ibid., 259.Google Scholar
  4. 4.
  5. 5.
    Ibid., 134.Google Scholar
  6. 6.
  7. 7.
  8. 8.
    Castells, M. 2001. The Internet Galaxy: Reflection on the Internet, Business, and Society. Oxford: Oxford University Press, 22. ‘‘The Internet did not originate in the business world. It was too daring a technology, too expensive a project, and too risky an initiative to be assumed by profit-oriented organizations.’’Google Scholar
  9. 9.
    MacIntyre, S. 1997. Social and psychological issues associated with the new genetics. Philosophical Transactions of the Royal Society of London 352: 1095–1101.CrossRefPubMedGoogle Scholar
  10. 10.
    Bubela, T. M. and Caulfield T. A. 2004. Do the print media ‘‘hype’’ genetic research? A comparison of newspaper stories and peer-reviewed research papers. Canadian Medical Association Journal 170 (9): 1399–1400. The authors investigated 26 newspapers from four countries or 627 newspaper articles reporting on 111 papers published in 24 scientific and medical journals.CrossRefPubMedGoogle Scholar
  11. 11.
    Ibid., 1404.Google Scholar
  12. 12.
    MacIntyre, ibid., 1095.Google Scholar
  13. 13.
    For the purpose of this chapter I will use the terms illness and disease interchangeably without specifying their semantics or differences originating from local/peripheral knowledge.Google Scholar
  14. 14.
    For more details on available tests see Genetics & IVF Institute at <http://www.givf.com>.
  15. 15.
    American Council of Life Insurance, 1996. The need for genetic information insurance. Statement of the American Council of Life Insurance presented to the National Association of Insurance Commissioners Genetic Testing. Working Group of the Life Insurance (A) Committee on 3 June 1996. White paper. Washington, D.C. Quoted in Brockett, P. L., MacMinn, R., and Carter, M. 1999. Genetic testing, insurance economics, and societal responsibility. North American Actuarial Journal 3 (1): 1–20, 3.Google Scholar
  16. 16.
    Author unknown. 2003. Genetic testing and predictive medicine. Conference of European Churches. Commission for Church and Society. Working Group on Bioethics, 1–13, available at <http://www.cec-kek.org/English/BioethicGeneticTesting.pdf>. Cited 7 July 2004. The following quotations refer to this article.
  17. 17.
  18. 18.
    Habermas, J. 2003. The Future of Human Nature. London: Polity Press in association with Blackwell. [Die Zukunft der menschlichen Natur. Auf dem Weg zu einer liberalen Eugenik? Frankfurt: Suhrkamp, 2001.] Interestingly, the English version contains a postscript, and the essay on faith, which are missing in the original German version, in which Habermas seems to argue that in the genetic era philosophy is moving towards religion. A controversial move indeed. I refer here to pp. 102–103.Google Scholar
  19. 19.
    Lowton, K. and Gabe, J. 2003. Life on a slippery slope: perceptions of health with cystic fibrosis. Sociology of Health & Illness 25 (4): 289–319, 298.CrossRefGoogle Scholar
  20. 20.
    Ibid., 296.Google Scholar
  21. 21.
    Bury, M. 1991. The sociology of chronic illness: a review of research and prospects. Sociology of Health & Illness 13 (4): 451–468. Quoted in Lowton and Gabe, ibid., 291.CrossRefGoogle Scholar
  22. 22.
    Ibid., 315.Google Scholar
  23. 23.
    Catholic and Protestant Churches have never absolutely condemned technological and scientific research—of course after Copernicus and Galileo. In the debate concerning IVF, genetic research, and cloning, the Churches have maintained an open position that reveals their will to avoid the mistakes of the past. Even the abortion debate has demonstrated how stratified and sophisticated their argumentation is, which should not be confused with the sectarian fighting among some of its members. For a detailed analysis of the official documents and position taken by the Churches in the genetic debate, see Betta, M. 1995. Embryonenforschung und Familie. Zur Politik der Reproduction in Grossbritannien, Italien, and der Bundesrepublik Deutschland. Frankfurt, Paris, New York: Peter Lang Verlag, especially 147–163.Google Scholar
  24. 24.
    Author unknown, ibid., note 6, p. 10, available at <http://www.cec-kek.org/English/Bioethic GeneticTesting.pdf>.
  25. 25.
    Ibid., 12.Google Scholar
  26. 26.
    See Genetics & IVF Institute at <http://www.givf.com>. The institute’s main offices and laboratories are in Fairfax, Virginia. The services offered include egg donors, the world’s largest group of sperm banks, and one of America’s most active pre-implantation genetics testing centres. Cited 14 September 2004.
  27. 27.
    Rizzo, F. R. 1999. Genetic testing and therapy: a pathway to progress and/or profit? International Journal of Social Economics 26 (1/2/3/): 109–133, 109.CrossRefGoogle Scholar
  28. 28.
    Ibid., 113.Google Scholar
  29. 29.
    Ibid., 112.Google Scholar
  30. 30.
    Rasmussen, N. 2004. The moral economy of the drug company–medical scientists collaboration in Interwar America. Social Studies of Science 34 (2): 161–185, 162.CrossRefPubMedGoogle Scholar
  31. 31.
    In the following paragraph I will refer to Rizzo’s analysis on pp. 113–118.Google Scholar
  32. 32.
    For a philosophical analysis of the transformation of patients into consumers through the emergence of the biotechnological laboratory, see Betta and Clulow, ibid.Google Scholar
  33. 33.
    Ibid., 129.Google Scholar
  34. 34.
    Bock, A.-K., Ibarreta, D., Lheureux, K., Libeau, M., and Nilsagaård, H. 2001. Data is destiny: health care and human genomics. Foresight 3 (4): 377–388, 378.CrossRefGoogle Scholar
  35. 35.
    Ibid., 378.Google Scholar
  36. 36.
    Betta and Clulow, ibid.Google Scholar
  37. 37.
    Rizzo, ibid., 109, 117–188.Google Scholar
  38. 38.
    Kleinke, J. D. 1997. The industrialization of health care. Journal of the American Medical Association 278: 1456–1457. Quoted in Rizzo, ibid., 117–118.CrossRefPubMedGoogle Scholar
  39. 39.
    Bock, ibid., 381–382.Google Scholar
  40. 40.
    Harvey, M., McMeekin, A., and Miles, I. 2002. Genomics and social science: issues and priorities. Foresight 4 (40): 13–28.CrossRefGoogle Scholar
  41. 41.
    Rasmussen, ibid., 161.Google Scholar
  42. 42.
    Rizzo, ibid., 112–113.Google Scholar
  43. 43.
    Rasmussen, ibid., 164.Google Scholar
  44. 44.
    Ibid., 178.Google Scholar
  45. 45.
    For the following reconstruction of the modernization of American medicine towards ‘‘scientific medicine’’ I will draw on Rasmussen’s historical analysis on pp. 163–174.Google Scholar
  46. 46.
    A trend that we are currently witnessing with the increasing attempts to discipline the biomedical laboratories and new genetic firms by requesting them to label genetically modified food or the exact ingredients of genetic drugs. The debate that originated out of GM food labelling and genetic drugs labelling, and which is currently taking place in all Western societies, confirms that we are in the middle of a dramatic reorganization of the pharmaceutical and healthcare system, as well as of the production systems of primary goods (food/ agriculture) and distributive justice.Google Scholar
  47. 47.
    Rasmussen, ibid., 166.Google Scholar
  48. 48.
    Ibid., 168Google Scholar
  49. 49.
    Ibid., 172.Google Scholar
  50. 50.
    Ibid., 177.Google Scholar
  51. 51.
    Perhaps current grants and grant applications can be classified in the same way, namely as a means by which scientists, especially social scientists, collaborate with governments or bureaucracies, such as the European Union which is still a supranational state, in order to secure much needed money for their academic activities, and to take part in the governance process. For governments grants are a form of scientific cooptation that does not evoke the same negative feelings as political cooptation of intellectuals and scientists. The effects, however, might be the same.Google Scholar
  52. 52.
    Rasmussen, ibid., 179.Google Scholar
  53. 53.
    Bock et al., ibid., 384.Google Scholar
  54. 54.
    Rizzo, ibid., 117.Google Scholar
  55. 55.
    Khoury, M. J., McCabe, L., Edward, R. B., and McCabe, M. D. 2003. Population screening in the age of genomic medicine. The New England Journal of Medicine 348 (1): 50–58, 50.CrossRefPubMedGoogle Scholar
  56. 56.
    The effects of genetic testing in the workplace have been a cause of concern to many observers. In spite of this, no national policies seem to have been created in order to manage this new form of employee–employer relation. The unions, not only in Australia, have failed to produce any coherent policy in the field. The following literature underlines the necessity to anticipate at least some aspects linked with testing employees. MacDonald, C. and Williams- Jones, B. 2002. Ethics and genetics: susceptibility testing in the workplace. Journal of Business Ethics 35: 235–241. French, S. 2002. Genetic testing in the workplace: the employer’s coin toss. Duke Law & Technology Review, May 9, available at <http://www.law.duke.edu/journals/ dltr/articles/2002dltr0015.html>. Cited 6 July 2004. Jinks, A. M. and Daniels, R. 1999. Workplace health concerns: a focus group study. Journal of Management and Medicine 13 (2): 95–104. Draper, E. 1998. Drug testing in the workplace: the allure of management technologies. International Journal of Sociology and Social Policy 18 (5/6): 62–103.
  57. 57.
    Annas, G. J., Glantz, L. H., and Roche, P. A. 1995. Guidelines for Protecting Privacy Information Stored in Genetic Data Banks. (The Genetic Privacy Act and Commentary). Boston, MA: Health Law Department, Boston University School of Public Health. Quoted in Rizzo, ibid., 127.Google Scholar
  58. 58.
    Rizzo, ibid., 123.Google Scholar
  59. 59.
    Ibid., 115.Google Scholar
  60. 60.
    Ibid., 118.Google Scholar
  61. 61.
    Ibid., 125.Google Scholar
  62. 62.
    Ibid., 129.Google Scholar
  63. 63.
    Brockett et al., ibid., 9.Google Scholar
  64. 64.
  65. 65.
    Fisher, N. L. 2004. Genetic testing and health insurance: can they coexist? Cleveland Clinical Journal of Medicine 71 (1): 8–9, 9.CrossRefGoogle Scholar
  66. 66.
    Brockett et al., ibid., 7.Google Scholar
  67. 67.
    Brockett, P. L. and Tankersley E. S. 2001 [1973]. The genetics revolution, economics, ethics, and insurance. Beauchamp T. L. and Bowie N. E. 2001 [1973]. Ethical Theory and Business, 6th edn. Englewood Cliffs, NJ: Prentice-Hall, 310–318, 311.Google Scholar
  68. 68.
    Ibid., 17.Google Scholar
  69. 69.
    Stutz, S. 1988. Embryo Handel. Bern: Zytglogge.Google Scholar
  70. 70.
    The question of selling human bodily parts is not new, but it is acquiring increasing importance. See on this topic Kolnsberg, H. R. 2003. An economic study: should we sell human organs? International Journal of Social Economics 30 (10): 1049–1069. Kolnberg develops economic scenarios and outcomes related to the selling of human organs particularly focusing on pricing and profitability in relation to donor benefit. In the end, the donors do not seem to benefit at all.Google Scholar
  71. 71.
    Harvey et al., ibid., 23.Google Scholar
  72. 72.
    Ibid., 23.Google Scholar
  73. 73.
    Ibid., 16–17.Google Scholar
  74. 74.
    Anderson, L. 2004. Rasche Lösungen, magische Pillen. Gen-Ethischer Informationsdienst 165 (August/September): 38–40.Google Scholar
  75. 75.
    Rusinko, C. A. and Sesok-Pizzini, D. A. 2003. Using a technological community framework to manage new medical technologies: the case of umbilical cord blood (UCB) banking. Journal of Health Organization and Management 17 (96): 399–421.CrossRefPubMedGoogle Scholar
  76. 76.
    Not only human bodies are meant here but also the entire genetic body of nature comprehensive of animals and plants.Google Scholar
  77. 77.
    Rusinko and Sesok-Pizzini, ibid., 400.Google Scholar
  78. 78.
    The authors draw on the theoretical model of the technological community framework developed by Van de Ven, A. H. 1993. A community perspective on the emergence of innovations. Journal of Engineering and Technology Management 10: 23–51.Google Scholar
  79. 79.
    Yang, M., Kuo, T. R., and Murphy Jones, R. 2003. The marketing strategies analysis for the umbilical cord blood banking service. International Journal of Health Care Quality Assurance 16 (6): 293–299, 294.CrossRefGoogle Scholar
  80. 80.
  81. 81.
    Rusinko and Sesok-Pizzini, ibid., 409.Google Scholar
  82. 82.
    Buchanan, A., Brock, D., Daniels, N., and Wikler, D. 2000. From Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press, 4.Google Scholar
  83. 83.
    Ibid., 406.Google Scholar
  84. 84.
    Yang et al., ibid., 294.Google Scholar
  85. 85.
    Rusinko and Sesok-Pizzino, ibid., 406.Google Scholar
  86. 86.
    Otlowski, M. and Williamson, R. 2003. Ethical and legal issues and the ‘‘new genetics.’’ Medical Journal of Australia 178: 582–585.PubMedGoogle Scholar
  87. 87.
    Gottweis, H. 1998. Governing molecules. The Discursive Politics of Genetic Engineering in Europe and the United States. Cambridge, MA, and London: MIT Press, 9, 27, 336–338.Google Scholar
  88. 88.
    Fisher, F. 2003. Reframing Public Policy: Discursive Politics and Deliberative Practices. New York: Oxford University Press, 2–5, 12–13.Google Scholar

Copyright information

© Springer 2006

Authors and Affiliations

  • Michela Betta
    • 1
  1. 1.Faculty of Business & EnterpriseSwinburne University of TechnologyVICAustralia

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