[A follow-up study of carriers of cystic fibrosis].
The aim of the present study was to assess the long-term impact of carrier screening for cystic fibrosis. The impact of being identified as a carrier for cystic fibrosis was assessed through three questionnaires measuring the emotional responses, changes in reproductive attitudes and decisions, retention of the result, and sharing of the information about the result with relatives. The questionnaires were sent to 160 women identified as carriers between 1990 and 1992 and to 200 randomly selected women with a negative result. Carriers became surprised, anxious and worried upon receipt of their result. However, this response disappeared once the partners had been tested and found negative. No sign of residual anxiety was found among carriers who answered the third questionnaire in November 1994. Carriers freely shared the information about their result with relatives, friends, and general practitioners. Few carriers changed their reproductive plans or attitudes to abortion of a foetus with CF due to the result. No decline in fertility or change in reproductive pattern were observed among carriers after testing. The imperfect sensitivity of the carrier test caused some misunderstanding in the retention of the result. This may reflect inadequacies in the information and counselling. Psychological factors are also believed to contribute to the misunderstanding of the result. The information should be improved to avoid false reassurance.
Brandt
N J
NJ
Afanit for klinisk genetik, Rigshospitalct, Køabenhavn.
Schwartz
M
M
Skovby
F
F
Clausen
H
H
D002353:Carrier State; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology; D003718:Denmark; D005260:Female; D005500:Follow-Up Studies; D006580:Genetic Carrier Screening; D005817:Genetic Counseling; D006801:Humans; D010865:Pilot Projects; D011296:Prenatal Diagnosis; D011795:Surveys and Questionnaires
En efterundersøgelse af anlaegsbaerere for cystisk fibrose.