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Am J Ment Retard. 1992 Mar;96(5):528-35.

Characteristics of fragile X relatives with different attitudes toward terminating an affected pregnancy.

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  • 1Department of Pediatrics, Rhode Island Hospital.


Female relatives of individuals with fragile X syndrome were asked whether they would terminate an affected pregnancy. Women were grouped according to how they answered this question and compared according to demographic characteristics, knowledge about the syndrome, perception of their risk for having an affected child, factors they considered important in family-planning decisions, and the magnitude of individual problems they perceived to be associated with raising an affected child. Important differences were identified between women willing to consider abortion and those who would not abort and between women who indicated what they would do and those who were unsure.


A questionnaire (included in the appendix) was administered to at least 33 women at risk of bearing a child with the fragile X syndrome to determine their genetic counseling needs and attitudes toward aborting an affected fetus. 17 had at least 1 affected child and 16 did not have such a child but were related to people who had the fragile X syndrome. Catholic women tended to be more unsure about terminating an affected pregnancy than non-Catholics (p=.02). This indicated that factors other than religion may be better predictors of attitude toward abortion. Women who were willing to choose abortion were more educated than those who were not sure (p=.02). These women were also more likely to perceive rearing a child with fragile X syndrome as negatively affecting their social lives (p=.04). In fact, they assigned greater importance to family focused factors, i.e., relationship with husbands (p=.04) and other children's well being (p=.02), than did those who would not terminate the pregnancy. These women did not perceive their risk of bearing a child with fragile X syndrome to be any higher or lower than those who would not abort. They had more knowledge about the features and genetics of fragile X syndrome than did those who were not sure about terminating the pregnancy (p=.05). Women who either would or would not consider abortion depended more on their physician's advice on family planning decisions than did those who were unsure (p=.04). These findings can prove useful in better understanding of client decision making about prenatal diagnosis and abortion and in contributing to the evaluation of screening programs and utilization of prenatal diagnosis for fragile X syndrome.

[PubMed - indexed for MEDLINE]
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