Abstract
This article presents the results of a study that investigates the way in which carriers of a mutation on the BRCA1 or the BRCA2 gene, associated with a high risk of breast and ovarian cancer, make their reproductive decisions. Using semi-structured interviews, the study explored the way in which these persons reflected on the acceptability of taking the risk of transmitting this mutation to the next generation, the arguments they used in favor or against taking that risk, and in the light of these arguments, their opinion on the acceptability of preimplantation genetic diagnosis (PGD) as a reproductive option. The findings suggest that when carriers are planning to have a(nother) child, they are mainly concerned by the risk of transmitting ‘much more than a gene’: essentially painful experiences not only with respect to health, such as undergoing cancer surveillance or combatting one’s own illness, but also with regards to family life, such as witnessing the illness and death of a close relative, encountering difficulties in finding a partner or reconsidering one’s plans to have a family. As for opinions concerning the acceptability of PGD as a reproductive option, opinions about personal recourse were varied but all expressed the understanding that PGD should be made available to those persons who consider it their best option.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
The Agence de la Biomédecine was created by the French bioethics law of 6 August 2004 to administrate four domains of activity: organ, tissue and cell transplantation, reproduction, embryology and human genetics. It functions under the authority of the French Ministry of Health.
The French National Cancer Institute, created by a law on public health policy promulgated on 9 August 2004, is a public health and research agency. It has two basic mandates: to develop expertise on cancer and to program, evaluate, and finance research projects.
Code de la Santé Publique (Public Health Law), Art L. 2131-4 (disposition added by the French bioethics law of 6 August 2004).
Women carriers face a cumulative risk of breast cancer estimated at 50–70% by the age of 70 and a risk of ovarian cancer estimated at 10–40% by the age of 70 (Stoppa-Lyonnet et al. 2008). Men also face a cumulative risk of developing breast cancer, estimated at not more than 7%, as well as an increased risk of developing prostate cancer (Levy-Lahad and Friedman 2007).
PND is not considered an appropriate option in France in that it allows parents who eventually decide not to terminate the pregnancy to know from birth whether or not the child carries the mutation. The child would not have the option as an adult of not knowing his or her status.
Our interview and data collection procedure was reviewed and authorized by the Commission Nationale de l’informatique et des libertés (CNIL).
Participation rate was fairly good at one of the two hospitals, where patients often returned for surveillance or cancer treatment following genetic testing (about 1 out of every 2). At the second hospital, participation rate was much lower, probably because surveillance was carried out at a different institution.
References
d’Agincourt-Canning, L. 2005. The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer. Journal of Genetic Counseling 14(1): 55–69.
d’Agincourt-Canning, L., and P. Baird. 2006. Genetic testing for hereditary cancers: The impact of gender on interest, uptake and ethical considerations. Critical Reviews in Oncology/hematology 58(2): 114–123.
Dekeuwer, C., and S. Bateman. 2011. Que dois-je transmettre à mes enfants? Gravité des maladies héréditaires et choix procréatifs. In Éthique et Famille (tome 2), ed. E. Rude-Antoine et M. Pievic, 143–163. Paris: L’Harmattan.
Fortuny, D., et al. 2009. Opinion about reproductive decision making among individuals undergoing BRCA1/2 genetic testing in a multicentre Spanish cohort. Human Reproduction 24(4): 1000–1006.
Hallowell, N., et al. 2003. Balancing autonomy and responsibility: The ethics of generating and disclosing genetic information. Journal of Medical Ethics 29(2): 74–79.
Hallowell, N., et al. 2005. Men’s Decision-Making about Predictive BRCA1/2 Testing: The role of family. Journal of Genetic Counseling 14(3): 207–217.
Hallowell, N., et al. 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.
Levy-Lahad, E., and E. Friedman. 2007. Cancer risk among BRCA1 and BRCA2 mutation carriers. British Journal of Cancer 96(1): 11–15.
Menon, U., et al. 2007. Views of BRCA gene mutation carriers on preimplantation genetic diagnosis as a reproductive option for hereditary breast and ovarian cancer. Human Reproduction 22(6): 1573–1577.
Pagani, O. et al. 2011. Pregnancy after breast cancer: If you wish, ma’am. Breast Cancer Research and Treatment. doi:10.1007/s10549-011-1643-7. Published online: 23 June.
Quinn, G.P., et al. 2009. Conflict between values and technology: Perceptions of preimplantation genetic diagnosis among women at increased risk for hereditary breast and ovarian cancer. Familial Cancer 8(4): 441–449.
Quinn, G.P., et al. 2010a. High risk men’s perceptions of pre-implantation genetic diagnosis for hereditary breast and ovarian cancer. Human Reproduction 25(10): 2543–2550.
Quinn, G.P., et al. 2010b. BRCA carriers’ thoughts on risk management in relation to preimplantation genetic diagnosis and childbearing: when too many choice are just a difficult as none. Fertility and Sterility 94(6): 2473–2475.
Rowley, E. 2008. On doing ‘being ordinary’: Women’s accounts of BRCA testing and maternal responsibility. New Genetics and Society 26(3): 241–250.
Staton, A.D., et al. 2008. Cancer risk reduction and reproductive concerns in female BRCA1/2 mutation carriers. Familial Cancer 7(2): 179–186.
Stoppa-Lyonnet, D. et al. 2008. Diagnostic prénatal, interruption médicale de grossesse, diagnostic préimplantatoire et formes héréditaires de cancers. Rapport rédigé à la demande de l’Agence de la Biomédecine et Institut National du Cancer, 64. Avril 2008. http://www.agence-biomedecine.fr/professionnels/rapports-et-etudes-realises-autour-de-l-activite-de-dpi.html. Accessed 27 July 2011.
Strømsvik, N., et al. 2009. Men in the women’s world of hereditary breast and ovarian cancer—a systematic review. Familial Cancer 8: 221–229.
Strømsvik, N., et al. 2010. Stigmatization and male identity: Norwegian males’ experience after identification as BRCA1/2 mutation carriers. Journal of Genetic Counseling 19(4): 360–370.
Acknowledgments
This work was supported by the Agence de la Biomédecine and the Fondation de France.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Dekeuwer, C., Bateman, S. Much more than a gene: hereditary breast and ovarian cancer, reproductive choices and family life. Med Health Care and Philos 16, 231–244 (2013). https://doi.org/10.1007/s11019-011-9361-9
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11019-011-9361-9