Abstract
Cystic fibrosis (CF) is the most common recessive condition affecting the White British population. Facilitating reproductive decision making for couples at genetic risk for CF is an important aspect of genetic counseling practice in the UK. The purpose of this study was to explore the reproductive decision making process for 31 members of CF carrier couples (15 men and 16 women) with or without an affected child. The design involved a qualitative approach consisting of semi-structured interviews and data analysis informed by grounded theory methodology. Sex and personal experience of CF were identified as factors that may influence reproductive decision making. Findings suggest these hypotheses: (1) CF carrier couples who have an affected child/pregnancy, are more likely to embark on another pregnancy than couples who have a healthy child from an at-risk pregnancy, and (2) men and women play different roles in the reproductive decision making process. Data analysis resulted in development of a structured framework modeling the reproductive decision making process, which may be helpful in guiding genetic counseling with CF carrier couples and other at risk couples making reproductive decisions.
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Acknowledgements
This paper is based upon the work of four Genetic Counseling MSc theses, from the University of Manchester, U.K. in 2007. We are grateful for the assistance of all staff in Genetic Medicine, St Mary’s Hospital, Central Manchester University Hospitals NHS Foundation Trust, Manchester UK, who enabled recruitment and provided support and constructive comments throughout. We are particularly grateful to the individuals who agreed to be interviewed and generously gave up their time to discuss their personal, and sometimes difficult, experiences with us. This research would not have been possible without their participation.
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The author(s) state that they have no conflict of interest with this study and can confirm full control of primary data.
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This work was supported by the Manchester NIHR Biomedical Research Centre.
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Myring, J., Beckett, W., Jassi, R. et al. Shock, Adjust, Decide: Reproductive Decision Making in Cystic Fibrosis (CF) Carrier Couples—A Qualitative Study. J Genet Counsel 20, 404–417 (2011). https://doi.org/10.1007/s10897-011-9363-z
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DOI: https://doi.org/10.1007/s10897-011-9363-z