Abstract
Recent advances in molecular genetic research have prenatal diagnosis and carrier detection for phenylketonuria (PKU) and for cystic fibrosis (CF). All of the ently followed in our PKU and CF Clinics were surveyed to test the hypothesis that parents' willingness to use prenatal diagnosis correlates with their perception of burden of disease (i.e. risk of long-term handicap and/or mortality). A questionnaire was mailed to 66 families of children with CF and 37 families of children with PKU. Knowledge about the disease and about clinical genetics in general were examined. Socioeconomic status, level of education, and religious affiliation were ascertained to determine if these were significant predictors of parental responses. The responses from each individual were subjected to multi-variant analysis. In addition, qualitative data were examined utilizing content analysis. The response rates were 56% for CF and 59% for PKU. The overwhelming majority of parents of children with PKU ranked their children as being mildly ill or not ill at all. None indicated that they would use prenatal diagnosis. By contrast, 37% of parents of children with CF ranked their children as being moderately ill; 19% of parents of children with CF indicated that they would consider using prenatal diagnosis within the next five years. Many of the parents were still unsure about how the test would alter their plans. The study supports the notion that perception of burden of disease is a major determinant of parental attitudes toward prenatal diagnosis.
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Williams, H., Ostrer, H. & Chesrown, S. PARENTS' ATTITUDES TOWARD PRENATAL DIAGNOSIS OF CYSTIC FIBROSIS AND PHENYLKETONURIA. Pediatr Res 21 (Suppl 4), 295 (1987). https://doi.org/10.1203/00006450-198704010-00768
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DOI: https://doi.org/10.1203/00006450-198704010-00768