Psychological impact of carrier screening for cystic fibrosis among pregnant women

Eur J Hum Genet. 1996;4(2):120-3. doi: 10.1159/000472181.

Abstract

The aim of the present study was to assess the impact of being identified 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 detect only a proportion of carriers. Few carriers considered changing their reproductive plans due to the result of the test. A few women identified as carrier regretted having had the test.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Cystic Fibrosis / genetics
  • Cystic Fibrosis / psychology*
  • Female
  • Follow-Up Studies
  • Genetic Carrier Screening*
  • Humans
  • Male
  • Pregnancy
  • Surveys and Questionnaires