Abstract
The aim of the present study was to assess the impact of being identified as a carrier of cystic fibrosis. The impact was assessed in terms of retention of the result, sharing of the information about the result with relatives, non-relatives, and GPs, changes in reproductive plans, and regrets about having been tested. Three unsupervised questionnaires were sent to 160 women identified as carriers between 1990 and 1992 in June 1992, October 1993, and November 1994. Carriers freely shared the information about their result with relatives, friends, and GPs. The inconclusiveness of the test gave rise to some confusion. This may reflect inadequacies in the information and counselling given to carriers, but psychological factors are also believed to be responsible. Thus, false reassurance may be a problem in a carrier screening with a test that detects only a proportion of carriers. Few carriers considered changing their reproductive plans due to the result of the test. A few women identified as carriers regretted having had the test.
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Notes
The information leaflet and the follow-up questionnaires are available on request from the authors.
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Acknowledgements
The study was funded by Helsefonden, Obelske Familiefond and the Danish CF Association. We thank Jakob Bjorner and Carsten Rosenberg Hansen for their assistance with the statistical analysis.
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Clausen, H., Brandt, N.J., Schwartz, M. et al. Psychological Impact of Carrier Screening for Cystic Fibrosis among Pregnant Women. Eur J Hum Genet 4, 120–123 (1996). https://doi.org/10.1159/000472181
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DOI: https://doi.org/10.1159/000472181
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