Medicine, Health Care and Philosophy

, Volume 16, Issue 2, pp 231–244 | Cite as

Much more than a gene: hereditary breast and ovarian cancer, reproductive choices and family life

Scientific Contribution

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.

Keywords

Duties to family Genetic predisposition to cancer Genetic testing Hereditary breast and ovarian cancer Preimplantation genetic diagnosis (PGD) Reproductive choices 

Notes

Acknowledgments

This work was supported by the Agence de la Biomédecine and the Fondation de France.

References

  1. 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.PubMedCrossRefGoogle Scholar
  2. 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.PubMedCrossRefGoogle Scholar
  3. 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.Google Scholar
  4. 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.PubMedCrossRefGoogle Scholar
  5. 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.PubMedCrossRefGoogle Scholar
  6. 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.PubMedCrossRefGoogle Scholar
  7. 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.CrossRefGoogle Scholar
  8. Levy-Lahad, E., and E. Friedman. 2007. Cancer risk among BRCA1 and BRCA2 mutation carriers. British Journal of Cancer 96(1): 11–15.PubMedCrossRefGoogle Scholar
  9. 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.PubMedCrossRefGoogle Scholar
  10. 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.
  11. 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.PubMedCrossRefGoogle Scholar
  12. 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.PubMedCrossRefGoogle Scholar
  13. 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.PubMedCrossRefGoogle Scholar
  14. Rowley, E. 2008. On doing ‘being ordinary’: Women’s accounts of BRCA testing and maternal responsibility. New Genetics and Society 26(3): 241–250.CrossRefGoogle Scholar
  15. Staton, A.D., et al. 2008. Cancer risk reduction and reproductive concerns in female BRCA1/2 mutation carriers. Familial Cancer 7(2): 179–186.PubMedCrossRefGoogle Scholar
  16. 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.
  17. 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.PubMedCrossRefGoogle Scholar
  18. 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.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  1. 1.Faculté de PhilosophieUniversité Lyon 3 Jean Moulin, Institut de recherches philosophiquesLyonFrance
  2. 2.Centre de Recherche Sens, Ethique, Société(UMR CNRS 8137), Université Paris Descartes - Sorbonne Paris CitéParisFrance

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