Tests for hereditary predispositions to breast and ovarian cancer have figured among the first medical applications of the new knowledge gleaned from the Human Genome Project. These applications have set off heated debates on general issues such as intellectual property rights. The genetic diagnosis of breast cancer risks, and the management of women “at risk” has nevertheless developed following highly localized paths. There are major differences in the organization of testing, uses of genetic tests, and the follow up of patients. This article studies testing practices and ways of managing breast cancer risk in France and compares them with those in the United States and United Kingdom. It shows how the complex interaction between global and local factors shapes the multiple meanings assumed by the phrase cancer risk.
Advisory Committee on Genetic Testing.1998 . Report on genetic testing for late onset disorders. Health Department of the United Kingdom, September.
2.
Aldeswards, V., and L. Sachs.1998. Risk discourse: Re-contextualization of numerical values. Clinical Practice18 (2): 191-210.
3.
American Society of Clinical Oncology.1996 . Genetic testing for cancer susceptibility. Journal of Clinical Oncology14:1730-36.
4.
Amir, E., D.G. Evans, A. Shenton, F. Laloo, A. Moran, C. Boggis, M. Wilson, and A. Howell.2003. Evaluation of breast cancer risk assessment packages in the family evaluation and screening programs. Journal of Medical Genetics40:807-14.
5.
Armstrong, David.1983. The political anatomy of the body. Cambridge, UK: Cambridge University Press.
6.
Aronowitz, Robert.1998. Making sense of illness: Science, society and disease . Cambridge, UK: Cambridge University Press.
7.
---. 2001. Do not delay: Breast cancer and time 1900-1970 . The Milbank Quarterly79 (3): 355-86.
8.
Berlivet, Luc.2000. Une santé à risque. L'action publique de lutte contre l'alcoolisme et le tabagisme en France, 1954-1999. PhD diss., University of Rennes.
9.
Bock, Gertruida de, Christi van Aspren, Josephine de Vries, George Hageman, Michael Springer, and Job Kievit.2001. How women with a family history of breast cancer and their general practitioners act on genetic advice in general practice: Prospective longitudinal study. British Medical Journal322:26-27.
10.
Bonadona, U., and P. Saltel.2005. La mission de messager dévolue au patient-consultant en oncogénétique: Enjeux psychologiques. In Prédisposition génétique au cancer: Questions psychologiques et enjeux de société, 25-32. Paris : John Libbey.
11.
Bouchard Lousie, I. Blancquaert, F. Eisinger, W.D. Foulkes, G. Evans, H. Sobol, C. Julian-Reynier, P. Venin, F. Chabal, C. Nogues, et al. 2004. Prevention and genetic testing for breast cancer: Variations in medical decisions. Social Sciences and Medicine58:1085-96.
12.
Bourret, Pascale.2005. BRCA patients and clinical collectives: New configurations of actions in cancer genetics practices. Social Studies of Science35 (1): 41-68.
13.
Cancer Genetics Studies Consortium.1997. Recommendations for follow-up care of individuals with inherited predisposition to cancer. Journal of the American Medical Association277:997-1003.
14.
Cassier, Maurice, and Jean-Paul Gaudillière .2000. Recherche, médecine et marché: La génétique du cancer du sein. Sciences Sociales et Santé18 (4): 29-49.
15.
Clarke, Adele, Laura Mamo, Jennifer Fishman, Janet Shim, and Jennifer Fosket .2003. Biomedicalization: Technoscientific transformation of health, illness and U.S. biomedicine. American Sociological Review68:161-94.
16.
Coleman, C.1993. The role of the comprehensive breast center. Nurse Practitioner's Forum4 (2): 110-14.
17.
Donai, Dan, and Rob Elles.2001. Integrated regional genetic services: Current and future provision. British Medical Journal322:1048-52.
18.
Douglas, Mary.1990. Risk as forensic resource. Daedalus119:1-16.
19.
Eisinger, François, N. Alby, A. Bremond, J. Dauplat, M. Espie, P. Janiaud, F. Kuttenn, J.P. Lebrun, J.P. Lefrand, J. Pierret, et al. 1998. Recommendation for medical management of hereditary breast and ovarian cancer: The French National Ad Hoc Committee . Annals of Oncology9:939-50.
20.
Eisinger, François, G. Geller, W. Burke, and N.A. Holtzman.1999. Cultural basis for differences between and French clinical recommendations for women at increased risk of breast and ovarian cancer. The Lancet353:919-20.
21.
Eisinger, François, D. Stoppa-Lyonnet, C. Lasset, C. Julian-Reynier.2001. Comparison of physicians' and cancer prone women's attitudes about breast/ovarian prophylactic surgery. Results from two national surveys . Familial Cancer1:157-62.
22.
Eisinger, François, B. Bressac, D. Castaigne, P.H. Cotta, J. Lansac, J.P. Lefranc, A. Lesur, C. Nogues, J. Pierret, S. Puy-Pernias, et al. 2004. Identification and management of hereditary predisposition to cancer of the breast and the ovary. Bulletin du cancer91 (7-8): 655-56.
23.
Emery, Jon, and Susan Hayflick.2001. The challenge of integrating genetic medicine into primary care. British Medical Journal322:1027-30.
24.
Executive Committee of the Clinical Molecular Genetics Society.1999. Gene patents and clinical molecular testing in the UK: Threats, weaknesses, opportunities and strengths.
25.
Gail, M.H., L.A. Brinton, D.P. Bryar, J.K. Carle, S.B. Green, C. Scharrer, J.J. Mulvihilli, et al. 1989. Projecting individual probabilities of developing breast cancer for white females who are being examined annually. Journal of the National Cancer Institute81 (24): 1879-86.
26.
Gaudillière, Jean-Paul, and Maurice Cassier .2001. Production, valorisation et usage des savoirs: La genetique du cancer du sein. Rapport de Recherche . MIRE contract 3/1998, Paris.
27.
Gaudillière, Jean Paul, and Ilana Löwy, eds. 2001. Heredity and infection: The history of disease transmission. London: Routledge.
28.
---. 2005. Medicine, markets and public health: Contemporary testing for breast cancer predispositions. In Medecine, Markets and Mass Media: Producing Health in the Twentieth Century, ed. Virgina Berridge and Kelly Loughin, 266-87. London: Routledge .
29.
Grann, V.R., J.S. Jacobson, D. Thomason, D. Hershman, D.F. Hertjan, and A.I. Neugut.2002. Effect of prevention strategies on survival and quality-adjusted survival of women with BRCA 1/2 Mutations: An updated decision analysis. Journal of Clinical Oncology20 (10): 2520-29.
30.
Hartmann, L.C., T.A. Sellers, D.J. Schaid, T.S. Frank, C.L. Soderberg, D.L. Sitta, M.H. First, C.S. Grant, J.H. Donohue, J.E. Wodds, et al. 2001. Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers. Journal of National Cancer Institute93 (21): 1586-87.
31.
Hatcher, M. Bebbington, and L.J. Fallowfield .2003. A qualitative study looking at the psychosocial implications of bilateral prophylactic mastectomy. The Breast12:1-9.
32.
Hayes, Michael.1992. On the epistemology of risk: Language, logic and social science. Social Science and Medicine35 (4): 401-7.
33.
Hogle, Linda.2001. Chemoprevention for healthy women: Harbinger of things to come? Health5 (3): 311-33.
34.
Holtzman, Neil, and S. Watson.1998. Promoting safe and effective genetic testing in the United States. Final report of the task force on genetic testing . Baltimore: Johns Hopkins University Press.
35.
Hoskins, K.F., J.E. Stopfer, K.A. Calzone, S.D. Marajver, T.R. Rebbeck, J.E. Garber, and B.L. Weber.1995. Assessment and counseling for women with a family history of breast cancer. Journal of the American Medical Association273 (7): 577-85.
36.
Inserm.1998. Risques héreditaires des cancers du sein et de l'ovaire. Quelle prise en charge?Paris: INSERM Éditions.
37.
Julian-Reynier, Claire, L. Bouchard, G. Evans, F. Eisinger, W.D. Foulkes, B. Kerr, I.R. Blancquaert, J.P. Moatti, and H. Sobol.2001. Women's attitude towards preventive strategies for hereditary breast or ovarian carcinoma differ from one country to another. Cancer92 (4): 959-68.
38.
Kaufert, Patricia A.1998. Women, resistance and the breast cancer movement . In Pragmatic Women and Body Politics, ed. Margaret Lock and Patricia A. Kaufert, 287-309. Cambridge , UK: Cambridge University Press.
39.
Kavanagh, Anne M., and Dorothy H. Broom .1998. Embodied risk: My body, myself?Social Science and Medicine46 (3): 437-44.
40.
Keating, Peter, and Alberto Cambrosio .2003. Biomedical platforms: Realigning the normal and the pathological in late-twentieth century medicine. Cambridge, MA: MIT Press.
41.
King, Marie Claire, J.H. Marks, J.B. Mandell, and the New York Breast Cancer Study Group.2003. Breast and ovarian cancer risks due to inherited mutation in BRCA1 and BRCA2. Science302:643-46.
42.
Kuerer, H.M., E.S. Hwang, J.P. Antony, R.A. Dudley, B. Crawford, W.M. Aubry, and W. Esserman.2000. Current national health insurance coverage policies for breast and ovarian cancer prophylactic surgery. Annals of Surgical Oncology7 (5): 325-32.
43.
Kutner, S.1999. Breast cancer genetics and managed care: The Kaiser Permanente experience. Cancer86:1750-54.
44.
Lawrence, Christopher, and Georges Weisz, eds. 1998. Greater than the parts: Holism in biomedicine, 1920-950. Oxford, UK: Oxford University Press.
45.
Lehman, Carol, C. Hughes, and L.T. Croyle.2000. Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Preventive Medicine31 (1): 75-80.
46.
Leopold, Ellen.1999. A darker ribbon: Breast cancer, women and their doctors in the 20th century. Boston: Beacon Press.
47.
Lerner, Barron.2001. Breast cancer wars: Hope, fear and the pursuit of care in 20th century America. Oxford, UK: Oxford University Press.
48.
Levy-Lahad, E., R. Catane, S. Eisenberg, B. Kaufman, G. Hornreich, E. Lishinsky, M. Shobat, B.L. Weber, U. Bezller, A. Lahad, et al. 1997. Founder BRCA1 and BRCA2 mutations in Ashkenazi Jews in Israel. American Journal of Human Genetics60 (5): 1013-2020.
49.
Link, J.S.2000. History and overview of comprehensive interdisciplinary breast centers. Surgical Oncology Clinics9 (2): 147-57.
50.
Lostumbo, L., N. Carbine, J. Wallace, and J. Ezzo.2004. Prophylactic mastectomy for the prevention of breast cancer. Cochrane database systematic reviews, CD 00274, October 18 (4).
51.
Löwy, Ilana, and George Weisz.2005. French hormones: Progestins and therapeutic variation in France. Social Sciences and Medicine60:2609-22.
52.
Lupton, Deborah.1994. Femininity, responsibility and the technological imperative: Discourses on breast cancer in the Australian press. International Journal of Health Services24 (1): 73-89.
53.
---. 1995. Taming uncertainty: Risk discourse and diagnostic testing . In The imperative of health: Public health and the regulated body, ed. Deborah Lupton, 77-105. London : Sage.
54.
Mackay, James, and Bruce Ponder.2001. The management of inherited breast cancer risk. In Textbook of breast cancer, ed. Gianni Bonadonna, Gabriel Nortobagui, and A. Massino-Gianni, 85-97. London : Martin Dunitz.
55.
Matloff, E.T., H. Shapell, K. Brierly, K. Brierley, B.A. Bernhardt, W. McKinnon, and B.N. Pershlein.2000. What would you do? Specialists' perspective on cancer genetic testing, prophylactic surgery and insurance discrimination . Journal of Clinical Oncology181:2484-92.
56.
Meijers-Heijboer, H., B. van Geel, W.L. van Putten, S.C. Henzen-Logmans, C. Seynaeue, M.B. Menke-Pluymers, C.C. Bartels; L.C. Verhoog, A.M. van den Ouweland, M.F. Niermeyer et al. 2001. Breast cancer after prophylactic bilateral mastectomy in women with BRCA1 or BRCA2 mutation. New England Journal of Medicine345:159-64.
57.
Olufunmilayo I., M.D. Olopade, and M.D. Grazia-Artioli .2004. Efficacy of risk-reducing salpingo-oophorectomy in women with BRCA1 and BRCA2 mutations. The Breast Journal10 (suppl. 1): S5-S9.
58.
Parthasarathy, Shobita.2005a. Architectures of genetic medicine: Comparing genetic testing for breast cancer in the USA and the UK. Social Studies of Science35 (1): 5-40.
59.
---. 2005b. The patent is political: The consequences of patenting the BRCA genes in Britain. Community Genetics8:235-42.
60.
Phillips, K., K. Kerlikowske, L. Baker, S.W. Chang, and M.L. Brown.1998. Factors associated with women's adherence to mammography screening guidelines. Health Services Research33 (1).
61.
Pinell, Patrice.1992. Naissance d'un fléau: Histoire de la lutte contre le cancer en France, 1890-1940. Paris: Éditions Métallié. [English translation: Pinell, P.2002. The fight against cancer: France 1890-1940. London: Routledge].
62.
Porter, Dorothy.2002. From social structure to social behavior: Social medicine and class culture in Britain after the Second World War. Lecture presented at EHESS, Paris.
63.
Proctor, Robert.1995. Cancer wars: How politics shapes what we know and what we don't know about cancer. New York: Basic Books.
64.
Rebbeck, Timothy, H.T. Lynch, S.L. Neuhasen, S.A. Narod, L. Van der Veen, J.E. Gerber, G. Evans, C. Isaacs, M.B. Doly, E. Matloff, et al. 2002. Prophylactic oophorectomy in carriers of BRCA1 and BRCA2 mutations. New England Journal of Medicine346:1616-22.
65.
Robson M., T. Svahn, B. McCormick, P. Borgen, C.A. Mudis, L. Norton, and K. Offit.2005. Appropriateness of breast-conserving treatment of breast carcinoma in women with germline mutations in BRCA1 or BRCA2: A clinic-based series. Cancer103 (1): 44-51.
66.
Rosen, Barry, J. Kwon, M. FungKee Fung, A. Gagliardi, and A. Chambers.2004. Systematic review of management options for women with a hereditary predisposition to ovarian cancer. Gynecological Oncology93:280-286.
67.
Rosenberg, Charles.1992. Framing diseases: Illness, society and history . In Framing disease: Studies in cultural history, ed. Charles Rosenberg and Janet Golden, 13-36. New Brunswick, NJ: Rutgers University Press.
68.
---. 1997/1976. George M. Bead and American nervousness . In No other gods: On science and American social thought , ed. Charles E. Rosenberg, 98-108. Baltimore, MD: Johns Hopkins University Press.
69.
---. 2002. The tyranny of diagnosis: Specific entities and individual experience. The Milbank Quarterly80 (2): 237-60.
70.
Sauven, P.2003. Guidelines for the management of women at increased familial risk of breast cancer. (Written on behalf of the Association of Breast Surgery Family History Guidelines Panel.) European Journal of Cancer40:653-65.
71.
Schwartz, Lisa M., Steven Woloshin, Floyd J. Fowler, and H. Gilbert Welsh .2004. Enthusiasm for cancer screening in the United States. JAMA204 (1): 71-8.
72.
Sevilla, C., J.P. Moatti, C. Julian-Reynier, F. Eisinger, D. Stoppa-Lyonnet, B. Bressac-de-Paillerets, and H. Sobol.2002. Testing for BRCA1 mutations: A cost-effectiveness analysis. European Journal of Human Genetics10 (10): 599-606.
73.
Stolier, A.J., G.M. Furhman, L. Mauterer, J.S. Bolton, and D.W. Superneau.2004. Initial experience with surgical treatment in the newly diagnosed breast cancer patient at high risk for BRCA1 or BRCA2 mutation. Breast Journal10 (6): 475-80.
74.
van Roosmalen, L., C. Verhoef, and P.F. Stalmeier.2002. Decision analysis of prophylactic surgery or screening for BRCA1 mutation carriers: A more prominent role for oophorectomy . Journal of Clinical Oncology20 (8): 2098-100.
75.
Vogel, Victor.1998. Breast cancer prevention: A review of current evidence . CA-Cancer Journal50:156-70.
76.
---. 1999. Tools for evaluating a patient's 5-year and lifetime probabilities . Postgraduate Medicine105 (6).
77.
Wainberg, S., and J. Husted.2004. Utilization of screening and preventive surgery among unaffected carriers of BRCA1 or BRCA2 gene mutation. Cancer Epidemiology, Biomarkers and Prevention13 (12): 1989-95.
78.
Watson, Eila, Joan Austoker, and Anneke Lucassen .2001. A study of GP referrals to family cancer clinics for breast/ovarian cancer. Family Practice18 (2): 131-34.
79.
Watson, Eila, A. Clements, P. Yudkin, P. Rose, C. Bukach, J. MacKay, C. Lucassen, and J. Austoker.2001. Evaluation of the impact of two educational interventions on GPs' management of familiar breast/ovarian cancer. British Journal of General Practice (October): 817-21.
80.
Weissmann, Carol S.1998. Women's health care: Activists traditions and institutional change. Baltimore: Johns Hopkins University Press.
