Maternal psychological reaction to newborn genetic screening for type 1 diabetes

Abstract

Objective: The purpose of this work was to describe levels of maternal anxiety, depressive symptoms, and perceptions of infant vulnerability associated with newborn genetic screening for susceptibility to type 1 diabetes.

Patients and methods: Mothers of infants tested at birth for genetic susceptibility to type 1 diabetes as part of a prospective study investigating potential environmental triggers of autoimmunity were recruited to this study. Three mother-infant cohorts were studied: 38 infants at increased genetic risk, 73 at low risk, and 76 who had not undergone testing. The Vulnerable Baby Scale, Edinburgh Postnatal Depression Scale, and state subscale of the State Trait Anxiety Inventory were administered at the 9-week, 4-month, and 1-year postnatal ages. Genetic-risk notification occurred at the 10-week postnatal age. Mothers whose infants had undergone genetic testing were also asked to subjectively rate how much they thought and worried about their child's genetic test result. Statistical analyses were conducted to test for differences in questionnaire scores among the 3 groups.

Results: No difference among the groups was detected in Vulnerable Baby Scale or Edinburgh Postnatal Depression Scale scores using linear mixed-effects model analysis. Maternal anxiety was paradoxically slightly lower in the increased-risk group shortly after notification of results, but there were no significant differences among the groups by 1 year. Mothers of infants in the high-risk group reported thinking and worrying about their child's test result significantly more than mothers of low-risk infants at both time points after notification of results.

Conclusions: Newborn genetic screening to identify infants at risk for type 1 diabetes is not associated with elevated levels of maternal anxiety, depressive symptoms, or heightened perceptions of infant vulnerability. However, responses to subjective assessment questions suggest that it is possible that more subtle effects on mothers do occur, and this requires further investigation.