Abstract
Receiving a positive test result for a BRCA mutation is a life-altering event. Thrust into a biomedical category of “high-risk” for developing breast and ovarian cancer, unaffected BRCA-positive women confront decisions about how to manage their risk. The knowledge provided through the use of genetic testing burdens women with having to make crucial decisions in a context of great uncertainty. Using 25 semi-structured interviews, this paper examines how women make decisions about how to manage their health after learning about a BRCA mutation. We situate the biographies of these women in the context of neoliberal expectations about personal responsibility for health and gender norms, and argue that the intersection of these imperatives plays out in unique ways depending on an individual’s life-stage, resulting in stratified decision-making. For older women who are married and have children, gender and health expectations neatly align. However, for younger, single women without children, the normative expectations about gender and health management often conflict, resulting in the prioritization of gender imperatives over health expectations, albeit temporarily. The analysis concludes with a discussion of the implications of BRCA testing for women and their experiences of choice and decision-making as well as their resistance to preventative surgeries.
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12 May 2019
The original version of this paper was inadvertently published with an incorrect author name. The correct name of the author is Marleah Dean. No other changes to the article have been made. We apologise for any inconvenience caused to our readers.
Notes
This paper centers on the factors shaping women’s decisions about their own health. However, it is important to point out that a robust body of literature has also explored how beliefs about personal responsibility, kinship and gender shape decisions to disclose genetic information to others (Arribas-Ayllon et al. 2011; D’Agincourt-Canning 2001; Featherstone et al. 2006) or experiences of guilt and blame for transmitting mutations to their offspring (Arribas-Ayllon et al. 2008; Hallowell et al. 2006).
In using the term “external pressure,” we do not assume that such influence is motivated by perverse intentions or even that it is necessarily unwanted. We simply intend to acknowledge the presence of an external influence that impacts decision-making.
References
Arribas-Ayllon, M. 2016. After geneticization. Social Science and Medicine 159: 132–139. https://doi.org/10.1016/j.socscimed.2016.05.011.
Arribas-Ayllon, M., K. Featherstone, and P. Atkinson. 2011. The practical ethics of genetic responsibility: Non-disclosure and the autonomy of affect. Social Theory & Health 9 (1): 3–23. https://doi.org/10.1057/sth.2009.22.
Arribas-Ayllon, M., S. Sarangi, and A. Clarke. 2008. Managing self-responsibility through other-oriented blame: Family accounts of genetic testing. Social Science and Medicine 66 (7): 1521–1532. https://doi.org/10.1016/j.socscimed.2007.12.022.
Arribas-Ayllon, M., S. Sarangi, and A. Clarke. 2013. Genetic testing: Accounts of autonomy, responsibility and blame. Abingdon: Taylor & Francis.
D’Agincourt-Canning, L. 2001. Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics 15 (3): 231–247. https://doi.org/10.1111/1467-8519.00234.
Daly, M.B., R. Pilarski, J.E. Axilbund, M. Berry, S.S. Buys, B. Crawford, et al. 2016. Genetic/familial high-risk assessment: Breast and ovarian, Version 2.2015. Journal of the National Comprehensive Cancer Network 14 (2): 153. https://doi.org/10.6004/jnccn.2016.0018.
Dean, M. 2016. Celebrity health announcements and online health information seeking: An analysis of Angelina Jolie’s preventative health decision. Health communication 31 (6): 752–761. https://doi.org/10.1080/10410236.2014.995866.
Dean, M., and E.A. Rauscher. 2017. “It was an emotional baby”: Previvors’ family planning decision-making styles about hereditary breast and ovarian cancer risk. Journal of Genetic Counseling. 2: 89. https://doi.org/10.1007/s10897-017-0069-8.
Dubriwny, T.N. 2012. The vulnerable/empowered woman: Feminism, postfeminism, and women’s health. New Brunswick, NJ: Rutgers University Press.
Featherstone, K., P. Atkinson, A. Bharadwaj, and A. Clarke. 2006. Risky relations: Family, kinship and the new genetics. Bloomsbury: Academic.
Felt, U., and R. Müller. 2011. Tentative (id)entities: On technopolitical cultures and the experiencing of genetic testing. BioSocieties 6 (3): 342–363. https://doi.org/10.1057/biosoc.2011.5.
Fosket, J.R. 2004. Constructing “high-risk women”: The development and standardization of a breast cancer risk assessment tool. Science, Technology and Human Values 29 (3): 291.
Freelon, D.G. 2010. ReCal: Intercoder reliability calculation as a web service. International Journal of Internet Science 5 (1): 20–33.
Freelon, D.G. 2013. ReCal OIR: Ordinal, interval, and ratio intercoder reliability as a web service. International Journal of Internet Science 8 (1): 10–16.
Gibbon, S. 2006. Nurturing women and the BRCA genes: Gender, activism and the paradox of health awareness. Anthropology & Medicine 13 (2): 157–171. https://doi.org/10.1080/13648470600738435.
Gibbon, S. 2014. BRCA and the pluripotency of gender. Jornal Cadernos de Pesquisa em Ciencias Humanas 15 (107): 137–157.
Gibbon, S., E. Kampriani, and A. Nieden Zur. 2010. BRCA patients in Cuba, Greece and Germany: Comparative perspectives on public health, the state and the partial reproduction of ‘neoliberal’ subjects. BioSocieties 5 (4): 440. https://doi.org/10.1057/biosoc.2010.28.
Graham, H. 1985. Providers, negotiators and mediators: Women as the hidden carers. In Women, health, and healing: Toward a new perspective, ed. E. Lewin and V.L. Olesen. New York: Tavistock.
Greco, M. 1993. Psychosomatic subjects and the ‘duty to be well’. personal agency within. Economy and Society 22 (3): 357–372. https://doi.org/10.1080/03085149300000024.
Guest, G., K.M. MacQueen, and E.E. Namey. 2011. Applied thematic analysis. Thousand Oaks: SAGE Publications.
Guo, F., J.M. Hirth, Y.-L. Lin, G. Richardson, L. Levine, A.B. Berenson, and Y.-F. Kuo. 2017. Use of BRCA mutation test in the U.S., 2004–2014. American Journal of Preventive Medicine 52 (6): 702–709. https://doi.org/10.1016/j.amepre.2017.01.027.
Hallowell, N. 1999. Doing the right thing: Genetic risk and responsibility. Sociology of Health & Illness 21 (5): 597–621. https://doi.org/10.1111/1467-9566.00175.
Hallowell, N. 2000. Reconstructing the body or reconstructing the woman? Perceptions of prophylactic mastectomy for hereditary breast cancer risk. In Ideologies of breast cancer: Feminist perspectives, ed. L. Potts. New York: St. Martin’s Press.
Hallowell, N., A. Arden-Jones, R. Eeles, C. Foster, A. Lucassen, C. Moynihan, and M. Watson. 2006. Guilt, blame and responsibility: Men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health & Illness 28 (7): 969–988. https://doi.org/10.1111/j.1467-9566.2006.00515.x.
Hallowell, N., C. Foster, R. Eeles, A. Ardern-Jones, V. Murday, M. Watson, and A. Clarke. 2003. Balancing autonomy and responsibility: The ethics of generating and disclosing genetic information. Journal of Medical Ethics 29 (2): 74–83.
Hallowell, N., I. Jacobs, M. Richards, J. Mackay, and M. Gore. 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 (10): 683–691. https://doi.org/10.1136/jmg.38.10.683.
Hallowell, N., and J. Lawton. 2002. Negotiating present and future selves: Managing the risk of hereditary ovarian cancer by prophylactic surgery. Health 6 (4): 423–443. https://doi.org/10.1177/136345930200600402.
Happe, K.E. 2006. Heredity, gender and the discourse of ovarian cancer. New Genetics and Society 25 (2): 171–196. https://doi.org/10.1080/14636770600855226.
Happe, K.E. 2013. The material gene: Gender, race, and heredity after the human genome project. New York: New York University Press.
Haraway, D.J. 1991. Simians, cyborgs, and women: The reinvention of nature, 1st ed. New York: Routledge.
Howard, A.F., L.G. Balneaves, J.L. Bottorff, and P. Rodney. 2011. Preserving the self: The process of decision making about hereditary breast cancer and ovarian cancer risk reduction. Qualitative Health Research 21 (4): 502–519. https://doi.org/10.1177/1049732310387798.
Howard, A.F., J.L. Bottorff, L.G. Balneaves, and C. Kim-Sing. 2010. Women’s constructions of the ‘right time’ to consider decisions about risk-reducing mastectomy and risk-reducing oophorectomy. BMC Women’s Health 10: 24. https://doi.org/10.1186/1472-6874-10-24.
Hycner, R. 1985. Some guidelines for the phenomenological analysis of interview data. Human Studies 8 (3): 279–303. https://doi.org/10.1007/BF00142995.
Jolie, A. 2013. My medical choice. New York Times.
Joseph, G. 2014. Genetics to the people: BRCA as public health and the dissemination of cancer risk knowledge. In Breast cancer gene research and medical practices: Transnational perspectives in the time of BRCA, eds. S. Gibbon, G. Joseph, J. Mozersky, A. zur Nieden, and S. Palfner, 57–72.
Klawiter, M. 2008. The biopolitics of breast cancer: Changing cultures of disease and activism. Minneapolis: University of Minnesota Press.
Kristensen, D.B., M. Lim, and S. Askegaard. 2016. Healthism in Denmark: State, market, and the search for a “Moral Compass”. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine. https://doi.org/10.1177/1363459316638541.
Kuchenbaecker, K.B., J.L. Hopper, D.R. Barnes, et al. 2017. Risks of breast, ovarian, and contralateral breast cancer for BRCA1 and BRCA2 mutation carriers. Journal of the American Medical Association 317 (23): 2402–2416. https://doi.org/10.1001/jama.2017.7112.
Lee, S.S.-J. 2014. Empowerment and the rendering of biocapital in direct to consumer personal genomics. In Breast cancer gene research and medical practices: Transnational perspectives in the time of BRCA, eds. S. Gibbon, G. Joseph, J. Mozersky, A. zur Nieden, and S. Palfner, 135–150.
Lippman, A. 1991. Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. American Journal of Law & Medicine 17 (1–2): 15–50.
Lippman, A. 1992. Led (astray) by genetic maps: The cartography of the human genome and health-care. Social Science and Medicine 35 (12): 1469–1476. https://doi.org/10.1016/0277-9536(92)90049-v.
Lock, M., A. Young, and A. Cambrosio, eds. 2000. Living and working with the new medical technologies: Intersections of inquiry.
Lupton, D. 1995. The imperative of health: Public health and the regulated body. Thousand Oaks: Sage Publications.
Morgan, K.P. 1998. Contested bodies, contested knowledges; women, health and the politics of medicalization. In The politics of women’s health: Exploring agency and autonomy, ed. S. Sherwin. Philadelphia: Temple University Press.
Nabi, H., M. Dorval, J. Chiquette, and J. Simard. 2017. Increased use of BRCA mutation test in unaffected women over the period 2004–2014 in the U.S.: Further evidence of the “Angelina Jolie effect”? American Journal of Preventive Medicine 53 (5): e195–e196. https://doi.org/10.1016/j.amepre.2017.05.016.
Novas, C., and N. Rose. 2000. Genetic risk and the birth of the somatic individual. Economy and Society 29 (4): 485.
Oudshoorn, N., and T.J. Pinch. 2003. Introduction how users and non-users matter. In How users matter: The co-construction of users and technologies, ed. N. Oudshoorn and T.J. Pinch. Cambridge, MA: MIT Press.
Parthasarathy, S. 2003. Knowledge is power: Genetic testing for breast cancer and patient activism in the United States and Britain. In How users matter: The co-construction of users and technologies, ed. N. Oudshoorn and T.J. Pinch, 133–150. Cambridge, MA: MIT Press.
Parthasarathy, S. 2005. Architectures of genetic medicine: Comparing genetic testing for breast cancer in the USA and the UK. Social Studies of Science 35 (1): 5–40. https://doi.org/10.1177/0306312705047172.
Pelters, B. 2014. Gender trouble? Queering the medical normativity of BRCA femininities. In Breast cancer gene research and medical practices: Transnational perspectives in the time of BRCA, eds., S. Gibbon, G. Joseph, J. Mozersky, A. zur Nieden, and S. Palfner.
Petersen, A.R., and D. Lupton. 2000. The new public health: Health and self in the age of risk. Thousand Oaks: Sage Publications.
Pollack, M. 2015. Myriad Genetics ending patent dispute on breast cancer risk testing. New York Times.
Polzer, J. 2016. The political is personal: Breast cancer risk, genetic(optim)ization, and the proactive subject as neoliberal biological citizen. In Neoliberal governance and health: Duties, risks, and vulnerabilities, ed. E. Power and J. Polzer, 132–166. Montreal: McGill-Queen’s University Press.
Polzer, J., and E. Power. 2016. Introduction: The governance of health in neoliberal societies. In Neoliberal governance and health: Duties, risks, and vulnerabilities, ed. E. Power and J. Polzer. Montreal: McGill-Queen’s University Press.
Power, E. 2016. Fat children, failed (future) consumer-citizens and mothers’ duties in neoliberal consumer society. In Neoliberal governance and health: Duties, risks, and vulnerabilities, ed. E. Power and J. Polzer. Montreal: McGill-Queen’s University Press.
Rapp, R. 1997. Real time fetus: The role of the sonogram in the age of monitored reproduction. In Cyborgs & Citadels: Anthropological interventions in emerging sciences and technologies, ed. G.L. Downey and J. Dumit, 31–48. Santa Fe, N.M.: School of American Research Press.
Robertson, A. 2000. Embodying risk, embodying political rationality: Women’s accounts of risks for breast cancer. Health, Risk & Society 2 (2): 219–235. https://doi.org/10.1080/713670161.
Saywell, C., L. Henderson, and L. Beattie. 2000. Sexualized illness: The newsworthy body in media representations of breast cancer. In Ideologies of breast cancer: Feminist perspectives, ed. L. Potts. New York: St. Martin’s Press.
Steinberg, P.D.L. 2016. Genes and the bioimaginary: Science, spectacle, culture. Farnham: Ashgate Publishing Limited.
Thomas, D.R. 2006. A general inductive approach for analyzing qualitative evaluation data. American Journal of Evaluation 27 (2): 237–246. https://doi.org/10.1177/1098214005283748.
U.S. Food and Drug Administration. 2018. FDA authorizes, with special controls, direct-to-consumer test that reports three mutations in the BRCA breast cancer genes. Retrieved from https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm599560.htm.
Acknowledgements
The authors would like to thank the anonymous reviewers of this paper for their valuable insight and the Facing Our Risk of Cancer Empowered (FORCE) community for their contributions to this study. This research was supported by an internal “New Researcher Grant” from the University of South Florida. Authors do not have any competing interests—intellectual or financial—in the research detailed in the manuscript. The study on which the research is based has been subject to appropriate ethical review.
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The original version of this article was revised: The original version of this paper was inadvertently published with an incorrect author name. The correct name of the author is Marleah Dean.
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Ross Arguedas, A.A., Scherr, C.L., Dean, M. et al. Intersections of health and gender imperatives: stratified decision-making among women with a BRCA mutation. BioSocieties 15, 245–269 (2020). https://doi.org/10.1057/s41292-019-00154-8
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DOI: https://doi.org/10.1057/s41292-019-00154-8