You definitely need a mastectomy if you are mutated! Experiencing breast cancer among genetic responsibilities and risk-reducing practices

Journal title SALUTE E SOCIETÀ
Author/s Barbara Morsello
Publishing Year 2023 Issue 2023/1
Language English Pages 15 P. 153-167 File size 387 KB
DOI 10.3280/SES2023-001011
DOI is like a bar code for intellectual property: to have more infomation click here

Below, you can see the article first page

If you want to buy this article in PDF format, you can do it, following the instructions to buy download credits

Article preview

FrancoAngeli is member of Publishers International Linking Association, Inc (PILA), a not-for-profit association which run the CrossRef service enabling links to and from online scholarly content.

Genetics and predictive tests are changing breast cancer prevention, both in terms of subjective experience and risk reducing practices. The aim of the article is to address two main research questions: What does the genetic information mean for subjects? How does prevention and risk-reducing practice change in relation to genetic information? Through qualitative research on breast cancer experience conducted in Italy at the National Cancer Institute of Rome, it was possible to answer these questions by including women who received a genetic response for the BRCA mutation. What emerges is that the genetic information shapes risk-reducing prac-tice, fostering genetic responsibilities within the family. This seems to encourage woman to perceive radical risk-reducing strategies such, as a mastectomy or oophorectomy, as the main - and often mandatory - solution to face breast cancer risk thereby underestimating the health risks and psychological burden involved in preventive surgery.

Keywords: BRCA; breast cancer; risk; prevention; genetics; mastectomy.

  1. Aiom (2019). In Italia vivono 150mila cittadini con mutazione BRCA. Il test genetico sia rimborsabile per pazienti e familiari. -- Available at: https://www.aiom.it/congresso-nazionale-aiom-in-italia-vivono-150mila-cittadini-con-mutazione-brca-il-test-genetico-sia-rimborsabile-per-pazienti-e-familiari/ (1/6/2022).
  2. Armstrong N. (2018). Navigating the uncertainties of screening: the contribution of social theory. Social Theory & Health, 17: 158-171.
  3. Baars J.E., Ausems M.G, van Riel E., M.C. Kars, Bleiker E.M. (2016). Communication between breast cancer patients who received inconclusive genetic test results and their daughters and sisters years after testing. Journal of Genetic Counseling, 25(3): 461-471.
  4. Bourret P. (2005). BRCA Patients and Clinical Collectives: New Configurations of Action in Cancer Genetics Practices. Social Studies of Science, 35, 1: 41-68. DOI: 10.1177/030631270504871
  5. Charmaz K. (2006). Constructing. Grounded Theory. A Practical Guide Through. Qualitative Analysis. London: Sage Publications.
  6. Clarke A.E., Shim J.K., Mamo L., Fosket J.R., Fishman J.R. (2003). Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine. American Sociological Review, 68(2): 161-194. DOI: 10.2307/151976
  7. Dean M. (2016). "It’s not if I get cancer, it’s when I get cancer": BRCA-positive patients’ (un)certain health experiences regarding hereditary breast and ovarian cancer risk. Social Science & Medicine, 163: 21-27.
  8. Franklin S., Roberts C. (2006). Born and Made: An Ethnography of Preimplantation Genetic Diagnosis. Princeton: Princeton University Press.
  9. Fosket J.R., Karran A., LaFia C. (2000). Breast Cancer in Popular Woman’s Magazines from 1913 to 1996. In: Kasper A.S., Ferguson, J.S., eds., Breast Cancer. Society Shapes an Epidemic. New York: Palgrave.
  10. Gibbon S. (2007). Breast Cancer Genes and the Gendering of Knowledge. Science and Citizenship in the Cultural Context of the New Genetics. Basingstoke: Palgrave.
  11. Gillespie C. (2015). The risk experience: the social effects of health screening and the emergence of a proto-illness. Sociology of Health & Illness, 37(7): 973-987. DOI: 10.1111/1467-9566.1225
  12. Hallowell N. (1999). Doing the right thing: genetic risk and responsibility. Sociology of Health and Illness, 21(5): 597-621. DOI: 10.1111/1467-9566.0017
  13. Hallowell N., Foster C., Eeles R., Ardern-Jones A., Murday V., Watson M. (2003). Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. Journal of Medical Ethics, 29: 74-83.
  14. Hallowell N., Foster C., Eeles R., Ardern-Jones A., Watson M. (2004). Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59: 553-565.
  15. Hauskeller C., Sturdy, S., Tutton R. (2013). Genetics and the sociology of identity, Sociology, 47(5): 875-886. DOI: 10.1177/003803851350501
  16. Hesse-Biber S. (2014). Waiting the cancer to come. Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer. Ann Arbor: University of Michigan Press.
  17. Jutel A. (2009). Sociology of Diagnosis: A Preliminary Review. Sociology of Health and Illness, 31: 278-99.
  18. Keating P., Cambrosio A., Nelson N.C. (2016). “Triple negative breast cancer”: Translational research and the (re)assembling of diseases in post-genomic medicine. Studies in History and Philosophy of Biological and Biomedical Sciences, 59: 20-34.
  19. Kenen R., Ardern-Jones A., Eeles R. (2003). Family stories and the use of heuristics: women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociology of Health and Illness, 25 (7): 838-65.
  20. Kerr A., Ross E., Jacques G., Cunningham-Burley S. (2018). The sociology of cancer: a decade of research. Sociology of Health & Illness, 40(3): 1-25. DOI: 10.1111/1467-9566.1266
  21. Leefmann J., Schaper M., Schicktanz S. (2017). The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature. Frontiers in Sociology, 1(18): 1-22.
  22. Marzuillo C., Vito C.D., D’Addario M., Santini P., D’Andrea E., Boccia A., Villari P. (2014). Are public health professionals prepared for public health genomics? A cross-sectional survey in Italy. BMC Health Services Research, 14: 1-8. DOI: 10.1186/1472-6963-14-23
  23. Melchor L, Benítez J. (2013). The complex genetic landscape of familial breast cancer. Human Genetics, 132(8): 845-63.
  24. Morsello B. (2018). Alimentazione e cancro. Tra responsabilità individuale e medicalizzazione. In: Corposanto C., ed., Alimentazione, salute e dintorni. Milano: Franco Angeli.
  25. Morsello B. (2021). Ibride. L’esperienza del cancro al seno tra mutazione genetica e identitaria. Rome: Roma Tre Press.
  26. Morsello B. (2019). Identità ibride. Come le innovazioni biomediche modificano pratiche e routine nelle pazienti oncologiche. In: Moretti V., Morsello B., eds., Interferenze digitali. Prospettive sociologiche su tecnologia, biomedicina e identità di genere. Milano: Franco Angeli.
  27. Novas C., Rose N. (2000). Genetic risk and the birth of the somatic individual. Economy and Society, 29(4): 485-513. DOI: 10.1080/0308514005017475
  28. Prainsack B., Schicktanz S., Werner-Felmayer G. (2014). Genetics as Social Practice: Transdisciplinary Views on Science and Culture. London: Routledge.
  29. Rabeharisoa V., Bourret P. (2009). Staging and Weighting Evidence in Biomedicine: Comparing Clinical Practices in Cancer Genetics and Psychiatric Genetics. Social Studies of Science, 39(5): 691-715. DOI: 10.1177/030631270910350
  30. Rose N. (2007). The Politics of Life Itself: Biomedicine, Power and Subjectivity in the Twenty First Century. Princeton: Princeton University Press.
  31. Rose N., Novas C. (2007). Biological citizenship. In: Ong A., Collier S., eds., Global Assemblages: Technology, Politics and Ethics as Anthropological Problems. Oxford: Blackwell.
  32. Ross Arguedas A.A., Scherr C.L., Dean M., Getachew-Smith H., Clements M. (2020). Intersections of health and gender imperatives: stratified decision-making among women with a BRCA mutation. BioSocieties, 15(2): 245-269. 
  33. Rowley E. (2007). On doing ‘being ordinary’: women’s accounts of BRCA testing and maternal responsibility. New Genetics and Society, 26(3): 241-250. DOI: 10.1080/1463677070170177
  34. Schicktanz S. (2018). Genetic risk and responsibility: reflections on a complex relationship. Journal of Risk Research, 21(12): 1-23. DOI: 10.1080/13669877.2016.122315
  35. Timmermans S., Buchbinder M. (2010). Patients-in-waiting. Living between sickness and health in the genomics era. Journal of Health and Social Behavior, 51(4): 408-423. DOI: 10.1177/002214651038679
  36. Werner-Lin A., Hoskins L.M., Doyle M.H., Greene M.H. (2012). ‘Cancer doesn’t have an age’: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18-24, Health, 16(6): 636-654. DOI: 10.1177/136345931244242
  37. Wöhlke S., Perry J. (2021). Responsibility in dealing with genetic risk information. Social Theory & Health, 19: 21-42.

Barbara Morsello, You definitely need a mastectomy if you are mutated! Experiencing breast cancer among genetic responsibilities and risk-reducing practices in "SALUTE E SOCIETÀ" 1/2023, pp 153-167, DOI: 10.3280/SES2023-001011