Orchestrating time in the genomic era: Timescape perspective on the changing practice of hereditary breast cancer prevention

Configurations

Volumn 13, Issue 3, 2005, Pages 421-434

  Huijer, Marli ^a  

^a UNIVERSITY OF GRONINGEN   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 37749034024     PISSN: 10631801     EISSN: 10806520     Source Type: Journal    
DOI: 10.1353/con.2007.0020     Document Type: Article

References (55)

1. Michel Foucault, Histoire de la sexualité, L'usage des plaisirs. Vol. 1: (Paris: Gallimard, 1984) ;
2. idem, Histoire de la sexualité, Le souci de soi. Vol. 2: (Paris: Gallimard, 1984).
3. R. Frankenberg, ed., Time, Health and Medicine (London: Sage, 1992).
4. Marli Huijer, "Vanuit het 'nu' de evolutle ovcrzien: Een temporele diagnose van genomics," Algemeen Nederlands Ttjdschrift voor de Wijsbegeerte 98 (2006): 257-269.
5. Zygmunt Bauman, Liquid Modernity (Oxford: Polity Press, 2000);
6. Zaki Laïdi, Le sacre du présent (Paris: Flammarlon, 2000).
7. Barbara Adam, Time and Social Theory (Oxford: Polity Press, 1990);
8. idem, Timewatch: The Social Analysis of Time (Cambridge: Polity Press, 1995);
9. idem, Timescapes of Modernity: The Environment and Invisible Hazards (London/New York: Routledge, 1998).
10. Many authors stress the need to orchestrate or organize Incomparable or conflicting levels of time. See Julius T. Fraser, Time as Conflict: A Scientific and Humanistic Study (Basel/Stuttgart: Birkhäuser, 1978);
11. Adam, Time and Social Theory (above, n. 5);
12. Peter F. Peters, Time, Innovation and Mobilities: Travel in Technological Cultures (London/New York: Routledge, 2006);
13. A. C. Bluedorn, The Human Organization of Time: Temporal Realities and Experience (Stanford: Stanford University Press, 2002).
14. Adam, Timewatch (above, n. 5), p. 13.
15. Adam, Time and Social Theory (above, n. 5), pp. 158-159;
16. Adam, Timewatch (above, n. 5), pp. 51-52.
17. Fraser confirms that to solve the adaptive problems of organisms in relation to time, a complex hierarchical system is at work "which extends from biochemical, instinctive, and reflex actions of the individual to learning, and to species replacement" (Fraser, Time as Conflict [above, n. 6], p. 78).
18. In novels and philosophy, many examples can be found in which living a good or aesthetic life is related to the tuning of various rhythms. See, e.g., Foucault's studies of Greek and Roman antiquity: (Foucault, L'usage des plaisirs and Le souci de soi (above, n. 1);
19. or Mario Vargas Llosa's descriptions of Don Rigoberto's bathroom performances in his novel In Praise of the Stepmother (New York: Farrar, Strauss and Giroux, 1990).
20. Adam, Timewatch (above, n. 5), p. 54.
21. Th. Wobbes, "Borstkanker in de famille," Nederlands Tijdschrift voor Geneeskunde 129 (1985): 2193-2195;
22. H. F. A. Vasen, L. V. A. M. Beex, R J. Cleton, H. J. A. Collette, J. A. Van Dongen, F. E. Van Leeuwen, M. A. Crommen, and P. Meeta Khna, "Clinical Heterogeneity of Hereditary Breast Cancer and Its Impact on Screening Protocols: The Dutch Experience on 24 Families under Surveillance," European Journal of Cancer 29 (1993): 1111-1114.
23. Olli. S. Miettinen, Theoretical Epidemiology (New York: Wiley, 1985);
24. Kenneth J. Rothman, Modern Epidemiology (Boston: Little, Brown, 1986).
25. R. Ottman, M. C. King, M. C. Pike, and B. E. Henderson, "Practical Guide for Estimating Risk of Familial Breast Cancer," Lancet 2 (1983): 556-558;
26. D. E. Anderson, and M. D. Badzioch, "Risk of Familial Breast Cancer," Cancer 56 (1985): 383-387.
27. B. Martin van Ineveld, Gerrit J. van Oortmarssen, HarryJ. de Koning, Rob Boer, and Paul J. van der Maas, "How Cost-Effective Is Breast Cancer Screening in Different EC Countries?" European Journal of Cancer 29 (1993): 1663-1668;
28. Gezondheidsraad/Health Council of the Netherlands, Het nut van bevolkingsonderzoek naar borstkanker (The Hague: Health Council of the Netherlands, Publication no. 2002/03, 2002).
29. Jackey Stacey, Teratologies: A Cultural Study of Cancer (London: Routledge, 1997), chap. 7.
30. Stephen. A. M. Snelders, Toine Pieters, and Frans J. Meljman, "Medische omgang met erfelijke aspecten van kanker in Nederland, 1900-1980," Nederlands Tijdschrift voor Geneeskunde 151 (2007): 712-715.
31. In the 1985 Dutch Journal for Medicine, Wobbes stresses the importance of taking a family anamnesis when women have breast-related complaints: "Being alert to the family anamnesis might contribute to the early finding and treatment of patients with breast cancer, i.e. when the disease is still curable" (Wobbes "Borstkanker in de famille" [above, n. 12], p. 2194).
32. This tendency was probably worldwide. See, e.g., the autobiographic writings of artist Jo Spence, who turned to her family history only after she had been diagnosed with breast cancer and then became aware that her mother's breast had already been removed while she was dying of liver cancer: Jo Spence, Cultural Sniping: The Art of Transgression (London/New York: Routledge, 1993), p. 131.
33. Helga Nowotny, Time: The Modern and Postmodern Experience, trans. N. Plaice (Oxford/Cambridge: Polity Press, 1994), p. 19
34. (first published as Eigenzeit: Entstehung und Strukturierung einer Zeitgefühl's, [Frankfurt a.M.: Suhrkamp, 1989]).
35. Since experimental screening projects in the Netherlands in the 1980s had shown that more than half the women were reluctant to (fully) participate in screening programs, there was all the more reason to convince women that concern for the future was important. See W. Scaf-Klomp, and W. J. A. van den Heuvel, Participatie in retroperspectief: Een onderzoek naar opkomstgedrag bij periodiek bevolkingsonderzoek naar borstkanker (Groningen: Northern Centre for Health Issues, University of Groningen, 1993).
36. P. Devilee, R. A. E. M. Tollenaar, and C. J. Cornelisse, "Van gen naar ziekte, van BRCA1 of BRCA2 naar mammacarcinoom," Nederlands Tijdschrift voor Geneeskunde 144 (2000): 2549-2551;
37. Raad voor Gezondheidsonderzoek, Nieuwe toepassingen van genetische kennis in de gezondheidszorg: Welke kennis is nodig? Advies 35 (The Hague: RGO, 2002), p. 53.
38. Pascale Bourret, "BRCA Patients and Clinical Collectives: New Configurations in Cancer Genetics Practices," Social Studies of Science 35 (2005): 41-68.
39. Louise Bouchard, I. Blancquaerth, F. Eisingers, W. D. Foulkes, G. Evans, H. Sobol, and C. Julian-Reynier, "Prevention and Genetic Testing for Breast Cancer: Variations and Medical Decisions," Social Science and Medicine 58 (2004): 1085-1096.
40. D. Ford, D. F. Easton, D. T. Bishop, S. A. Narod, and D. E. Goldgar, "Risks of Cancer in BRCA1-Mutation Carriers. Breast Cancer Linkage Consortium," Lancet 343 (1994): 692-695.
41. Thomas Hylland Eriksen, Tirannie van het moment De strijd tussen snelle en langzame tijd (Kampen: Agora, 2001).
42. See also Bauman, Liquid Modernity (above, n. 4);
43. Laïdi, Le sacre du présent (above, n. 4).
44. M. B. E. Menke-Pluymers, C. Seynaeve, A. N. Van Geel, J. G. M. Klijn, E. J. Meijers-Heijboer, and A. M. M. A. N. Eggermont, "Preventief chirurgisch ingrijpen bij erfelijke belasting voor borstkanker," Nederlands Tijdschrift voor Geneeskunde 149 (2005): 2663-2667 [CS];
45. A. N. Van Geel, E. J. T. Rutgers, G. C. Vos-Deckers, J. De Vries, and Th. Wobbes, "Vrouwen met erfelijk risico op borstkanker: Consensus van chirurgische vertegenwoordigers van de werkgroepen voor erfelijke tumoren ten aanzien van intensieve controle, diagnostiek en preventieve ablatio," Nederlands Tijdschrift voor Geneeskunde 141 (1997): 874-877.
46. Ibid. See also A. Antoniou, P. D. Pharoah, S. Narod, H. A. Risch, J. E. Eyfjord, J. L. Hopper, et al., "Average Risks of Breast and Ovarian Cancer Associated with BRCA1 or BRCA2 Mutations Detected in Case Series Unselected for Family History: A Combined Analysis of 22 Studies," American Journal of Human Genetics 72 (2003): 1117-1130.
47. S. Kapma, N. J. Leschot, and C. M. Aalfs, "DNA diagnostiek bij erfelijke kanker: Het belang van betrouwbare familiegegevens," Nederlands Tijdschrift voor Geneeskunde 149 (2005): 57-60.
48. Fraser, Time as Conflict (above, n. 6), pp. 71-72.
49. Marianne Boenink, "Genetische diagnostiek voor erfelijke borstkanker," in Genetica van laboratorium naar samenleving: De ongekende praktijk van voorspellende genetische testen, ed. Gerard de Vries and Klasien Horstman (Amsterdam: Aksant, 2004), pp. 35-63, on p. 43.
50. J. Nico D. de Neeling, Quality of Life: Het onderzoek naar welzijnseffecten van medische behandelingen (Utrecht: Wetenschappelijke uitgeverij Bunge, 1991).
51. Martha C. Nussbaum, Women and Human Development: The Capabilities Approach (Cambridge: Cambridge University Press, 2000);
52. idem, Upheavals of Thought: Tlie Intelligence of Emotions (Cambridge: Cambridge University Press, 2001).
53. "Complex issues arise around when to tell relatives, what to tell, who to tell and what they 'need to know'. . ., and while some people feel they are 'doing right' by their families by disclosing genetic information, others feel burdened by this need" (Kennan Forrest Keenan, Sheila A. Simpson, Brenda J. Wilson, Edwin R. van Teljlingen, Loma McKee, Neva Haites, and Eric Matthews, "'It's Their Blood not Mine': Who Is Responsible for (not) Telling Relatives About Genetic Risk?" Health, Risk and Society 7 [2005]: 209-226, on p. 210).
54. Nowotny, Time (above, n. 20).
55. Adam, Timewatch (above, n, 5), p. 51.