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01-05-2013 | Scientific Contribution

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

Authors: Catherine Dekeuwer, Simone Bateman

Published in: Medicine, Health Care and Philosophy | Issue 2/2013

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.

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.

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Title: Much more than a gene: hereditary breast and ovarian cancer, reproductive choices and family life
Authors: Catherine Dekeuwer
Simone Bateman
Publication date: 01-05-2013
Publisher: Springer Netherlands
Published in: Medicine, Health Care and Philosophy / Issue 2/2013
Print ISSN: 1386-7423
Electronic ISSN: 1572-8633
DOI: https://doi.org/10.1007/s11019-011-9361-9

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

Abstract

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