Negotiating present and future selves: Managing the risk of hereditary ovarian cancer by prophylactic surgery

Health

Volumn 6, Issue 4, 2002, Pages 423-443

  Hallowell, Nina ^a,b   Lawton, Julia ^c  

^a UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^b INSTITUTE OF CANCER RESEARCH   (United Kingdom)

^c NONE

Author keywords

Body; Genetic risk; Ovarian cancer; Prophylactic surgery; Self identity

Indexed keywords

EID: 0346741416     PISSN: 13634593     EISSN: None     Source Type: Journal    
DOI: 10.1177/136345930200600402     Document Type: Article

References (64)

1. Aziz, S., Kuperstein, G., Rosen, B., Nedelcu, R., McLaughlin, J. and Narod, S.A. (2001). A genetic epidemiological study of cancer of the fallopian tube. Gynecologic Oncology, 80, 341-5.
2. Baric, L. (1969). Recognition of the 'at-risk' role: A means to influence health behaviour. International Journal of Health Education, 12, 24-34.
3. Bartky, S.L. (1990). Femininity and domination: Studies in the phenomenology of oppression. New York: Routledge.
4. Beck, U. (1992). Risk society: Towards a new modernity. London: Sage.
5. Bronner, C.E., Baker, S.M., Morrison, P.T., Warren, G., Smith, L.G., Lescoe, M.K., Kane, M., Earabino, C., Lipford, J., Lindblom, A., Tannergard, P., Bollag, R.J., Godwin, A.R., Ward, D.C., Nordenskjold, M., Fishel, R., Kolodner, R. and Liskay, R.M. (1994). Mutation in the DNA mismatch repair gene homologue hMLH1 is associate with hereditary non-polyposis colon cancer. Nature, 368 (6468), 258-61.
6. Burke, W., Daly, M., Garber, J., Botkin, J., Kahn, M.J., Lynch, P., McTiernan, A., Offit, K., Perlman, J., Petersen, G., Thomson, E. and Varricchio, C. (1997). Recommendations for follow-up care of individuals with an inherited predisposition to cancer II. BRCA1 and BRCA2. Journal of the American Medical Association, 277, 997-1003.
7. Cannon, S. (1988). Female breast cancer: The individual experience and social organisation of its diagnosis and treatment. Unpublished PhD thesis, Staffordshire University.
8. Crawford, R. (1977). You are dangerous to your health: The ideology and politics of victim blaming. International Journal of Health Services, 7, 663-80.
9. Csordas, T., (Ed.). (1994). Embodiment and experience: The existential ground of culture and self. Cambridge: Cambridge University Press.
10. Davis, K. (1995). Reshaping the female body: The dilemma of cosmetic surgery. London: Routledge.
11. Douglas, M. (1992). Risk and blame: Essays in cultural theory. London: Routledge.
12. Easton, D.F., Ford, D., Bishop, D.T. and the Breast Cancer Linkage Consortium. (1995). Breast and ovarian cancer incidence in BRCA1 mutation carriers. American Journal of Human Genetics, 56, 265-71.
13. Eisinger, F., Alby, F., Bremond, A., Dauplat, J., Espie, M., Janiaud, P., Kuttenn, F., Lebrun, J.P., Lefranc, J.P., Pierret, J., Sobol, H., Stoppa-Lyonnet, D., Thouvenin, D., Tristant, H. and Feingold, J. (1998). Recommendations for medical management of hereditary breast and ovarian cancer: The French National Ad Hoc Committee. Annals of Oncology, 9(9), 939-50.
14. Featherstone, M., Hepworth, M. and Turner, B., (Eds). (1993). The body: Social process and cultural theory. London: Sage.
15. Fitzpatrick, M. (2000). The tyranny of health: Doctors and the regulation of lifestyle. London: Routledge.
16. Ford, D., Easton, D.F., Stratton, M., Narod, S., Goldgar, D., Devilee, P. and the Breast Cancer Linkage Consortium. (1997). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. American Journal of Human Genetics, 62, 676-89.
17. Foucault, M. (1991). Discipline and punish: The birth of the prison. London: Penguin Books.
18. Giddens, A. (1991). Modernity and self-identity: Self and society in the late modern age. Cambridge: Polity Press.
19. Gifford, S.M. (1986). The meaning of lumps: A case study in the ambiguities of risk. In C.R. Janes, R. Stall and S.M. Gifford (Eds.), Anthropology and epidemiology, pp. 213-46. Dordrecht: D. Reidel.
20. Glaser, B. and Strauss, A. (1967). The discovery of grounded theory. Chicago, IL: Aldine.
21. Gordon, D. (1990). Embodying illness: Embodying cancer. Culture, Medicine and Psychiatry, 14, 275-97.
22. Hallowell, N. (1999a). Advising on the management of genetic risk: Offering choice or prescribing action? Health, Risk and Society, 1, 267-81.
23. Hallowell, N. (1999b). Doing the right thing: Genetic risk and responsibility. Sociology of Health & Illness, 21, 597-621.
24. Hallowell, N. (2000). Reconstructing the body or reconstructing the woman? Perceptions of prophylactic mastectomy for hereditary breast cancer risk. In L. Potts (Ed.), Ideologies of breast cancer: Feminist perspectives, pp. 153-80. London: Macmillan Press.
25. Hallowell, N., Jacobs, I., Richards, M.P.M., Mackay, J. and Gore, M. (2001). Surveillance or surgery? A description of the factors that influence high-risk premenopausal women's decisions about prophylactic oophorectomy. Journal of Medical Genetics, 38, 683-91.
26. Kavanagh, A.M. and Broom, D.H. (1998). Embodied risk: My body, myself? Social Science & Medicine, 46, 437-44.
27. Kenen, R. (1994). The Human Genome Project: Creator of the potentially sick, potentially vulnerable and potentially stigmatized? In I. Robinson (Ed.), Life and death under high technology medicine, pp. 49-64. Manchester: Manchester University Press.
28. Langelleir, K.M. and Sullivan, C.F. (1998). Breast talk in breast cancer narratives. Qualitative Health Research, 8, 76-94.
29. Lawton, J. (2000). The dying process: Patients' experiences of palliative care. London: Routledge.
30. Leach, F.S., Nicolaides, N.C., Papadopoulos, N., Liu, B., Jen, J., Parsons, R., Peltomaki, P., Sistonen, P., Aaltonen, L.A., Nystromlahti, M., Guan, X.Y., Zhang, J., Meltzer, P.S., Yu, J.W., Kao, F.T., Chen, D.J., Cerosaletti, K.M., Fournier, R.E.K., Todd, S., Lewis, T., Leach, R.J., Naylor, S.L., Weissenbach, J., Mecklin, J.P., Jarvinen, H., Petersen, G.M., Hamilton, S.R., Green, J., Jass, J., Watson, P., Lynch, H.T., Trent, J.M., Delachapelle, A., Kinzler, K.W. and Vogelstein, B. (1993). Mutations of a MutS homolog in hereditary nonpolyposis colorectal cancer. Cell, 75(6), 1215-25.
31. Leder, D. (1990). The absent body. Chicago, IL: University of Chicago Press.
32. Lupton, D. (1993). Risk as moral danger: The social and political functions of risk discourse in public health. International Journal of Health Services, 23, 425-35.
33. Lupton, D. (1995). The imperative of health: Public health and the regulated body. London: Sage.
34. Martin, E. (1989). The woman in the body. Milton Keynes: Open University Press.
35. Mason, J. (1996). Gender, care and sensibility in family and kin relationships. In J. Holland and L. Adkins (Eds.), Sex, sensibility and the gendered body, pp. 15-36. Basingstoke: Macmillan.
36. Merleau-Ponty, M. (1962). Phenomenology of perception. London: Routledge & Kegan Paul.
37. Miki, J., Swensen, J., Shattuck-Eidens, D., Futreal, P.A., Harshman, K., Tavtigian, S., Liu, Q.Y., Cochran, C., Bennett, L.M., Ding, W., Bell, R., Rosenthal, J., Hussey, C., Tran, T., McClure, M., Frye, C., Hattier, T., Phelps, R., Haugenstrano, A., Katcher, H., Yakumo, K., Gholami, Z., Shaffer, D., Stone, S., Bayer, S., Wray, C., Bogden, R., Dayananth, P., Ward, J., Tonin, P., Narod, S., Bristow, P.K., Norris, F.H., Helvering, L., Morrison, P., Rosteck, P., Lai, M., Barrett, J.C., Lewis, C., Neuhausen, S., Cannonalbright, L., Goldgar, D., Wiseman, R., Kamb, A. and Skolnick, M.H. (1994). A strong candidate for the breast ovarian cancer susceptibility gene BRCA1. Science, 266, 66-71.
38. Muhr, T. (1994). Atlas-ti: Computer aided text interpretation and theory building. Berlin: Muhr.
39. National Institute of Health Consensus Conference Statement. (1994). Ovarian cancer: Screening, treatment, and follow-up. Gynecological Oncology, 55, S4-S14.
40. Paley, P.J., Swisher, E.M., Garcia, R.L., Agoff, S.N., Greer, B.E., Peters, K.L. and Goff, B.A. (2001). Occult cancer of the fallopian tube in BRCA-1 germline mutation carriers at prophylactic oophorectomy: A case for recommending surgical prophylaxis. Gybnecologic Oncology, 80, 176-80.
41. Petersen, A. (1998). The new genetics and the politics of public health. Critical Public Health, 8, 59-72.
42. Petersen, A. (1999). Counselling the genetically 'at risk': The poetics and politics of 'non-directiveness'. Health Risk and Society, 1, 253-66.
43. Petersen, A. and Lupton, D. (1996). The new public health: Health and self in the age of risk. London: Sage.
44. Piver, M.S., Jishi, M.F., Tsukada, Y. and Nava, G. (1993). Primary peritoneal carcinoma after prophylactic oophorectomy in women with a family history of ovarian cancer. A report of the Gilda Radner Familial Ovarian Cancer Registry. Cancer, 71, 2751-5.
45. Rapp, R. (2000). Testing women, testing the fetus: The social impact of amniocentsis in America. New York: Routledge.
46. Ruddick, S. (1989). Maternal thinking: Towards a politics of peace. London: The Women's Press.
47. Schrag, D., Kuntz, K.M., Garber, J. and Weeks, J.C. (1997). Decision analysis-effects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCA1 or BRCA2 mutations. New England Journal of Medicine, 336, 1465-71.
48. Shilling, C. (1993). The body and social theory. London: Sage.
49. Singer, D. and Hunter, M. (1999). The experience of premature menopause: A thematic discourse analysis. Journal of Reproductive and Infant Psychology, 17, 63-81.
50. Sontag, S. (1979). Illness as a metaphor. Harmondsworth: Penguin.
51. Stacey, J. (1997). Teratologies: A cultural study of cancer. London: Routledge.
52. Steinberg, D.L. (1996). Languages of risk: Genetic encryptions of the female body. Women: A Cultural Review, 7, 259-70.
53. Stephens, C. (2001). Women's experience at the time of menopause: Accounting for biological, cultural and psychological embodiment. Journal of Health Psychology, 6, 651-63.
54. Stratton, J.F., Gayther, S.A., Russell, P., Dearden, J., Gore, M., Blake, P., Easton, D. and Ponder, B.A. (1997). Contribution of BRCA1 mutations to ovarian cancer. New England Journal of Medicine, 336, 1125-30.
55. Strauss, A. and Corbin, J. (1990). Basics of qualitative research. London: Sage.
56. Tobacman, J.K., Greene, M.H., Tucker, M.A., Costa, J., Kase, R. and Fraumeni, J.F., Jr (1982). Intra-abdominal carcinomatosis after prophylactic oophorectomy in ovarian-cancer-prone families. Lancet, ii, 195-9.
57. Tong, R. (1997). Feminist approaches to bioethics: Theoretical reflections and practical applications. Oxford: Westview Press.
58. Turner, B.S. (1987). Medical power and social knowledge. London: Sage.
59. Weber, A.M., Hewett, W.J., Gajewski, W.H. and Curry, S.L. (1992). Serous carcinoma of the peritoneum after oophorectomy. Obstetrics & Gynecology, 80, 558-60.
60. Weber, B., Punzalen, C., Eisen, A., Narod, S., Garber, J., Isaacs, C., Daly, M., Neuhausen, S. and Rebbeck, T. (2000). Ovarian cancer risk reduction after bilateral prophylactic oophorectomy in BRCA1 and BRCA2 mutation carriers. American Journal of Human Genetics Supplement 2, Abstract 59.
61. Whittemore, A.S., Gong, G. and Itnyre, J. (1998). Prevalence and contribution of BRCA1 mutations in breast and ovarian cancer: Results from three U.S. Population-based case-control studies of ovarian cancer. American Journal of Human Genetics, 60, 496-504.
62. Williams, S.J. (1998). Health as moral performance: Ritual transgression and taboo. Health, 2, 435-57.
63. Williams, S.J. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness, 22, 40-67.
64. Wooster, R., Bignell, G., Lancaster, J., Swift, S., Seal, S., Mangion, J., Collins, N., Gregory, S., Gumbs, C. and Micklem, G. (1995). Identification of the breast cancer susceptibility gene BRCA2. Nature, 378, 789-91.