Abstract
This study examined the attitudes, feelings, and knowledge of 37 parents, 29 adult siblings, 126 aunts and uncles, and 30 cousins of 50 CF-affected individuals in 2 large inbred kindreds (Amish-Mennonite and Hutterite) prior to the availability of carrier testing and fetal diagnosis by DNA marker linkage analyses. Data was ascertained by selfadministered questionnaires. Some responses could be compared to 2 non-inbred CF populations studied by Kaback et al. (California) and Steele et al. (Pittsburgh).
Knowledge of the recurrence risk of CF changed planned family size (51% - present study vs 48% - Kaback et al.). Families continued to reproduce when other than the first child had CF (50% - present study vs. 15% - Steele et al.). The majority incorrectly identified the recurrence risk for CF to carrier parents (57%) and felt that carrier screening (61%) and fetal diagnosis (56%) should be done. The majority also felt that CF might be a possible reason for pregnancy termination (54%).
Despite our preconceived notions that these populations would not consider fetal diagnosis and carrier testing, our survey suggests that these optional procedures, which are now available may influence reproductive decisions in these families.
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Miller, S., Schwartz, R., Sapiro, J. et al. ACCEPTANCE OF CARRIER TESTING AND FETAL DIAGNOSIS OF CYSTIC FIEROSIS (CF) IN AMISHMENNONITE AND HUTTERITE CF KINDERDS. Pediatr Res 21 (Suppl 4), 259 (1987). https://doi.org/10.1203/00006450-198704010-00552
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DOI: https://doi.org/10.1203/00006450-198704010-00552