ATTITUDES TOWARD PRENATAL TESTING AND PREGNANCY TERMINATION AMONG A DIVERSE POPULATION OF PARENTS OF CHILDREN WITH INTELLECTUAL DISABILITIES

Purpose: To assess how parents of children with intellectual disabilities view prenatal testing and pregnancy termination for their child’s condition and identify correlates of these views.

Method: English- or Spanish-speaking parents of intellectually disabled children aged 2-10 years who were clients of a regional center or patients at an academic genetics clinic participated in a telephone interview. Among other items, they rated their agreement with two statements: “If I were to get pregnant, I would have a prenatal test to see if my baby will be born with [their child’s condition]” and “If I were to get pregnant and found out that my baby will be born with [that condition] I would choose to terminate the pregnancy.” Multivariate regression analysis was used to identify predictors of agreement with these statements.

Result: 57% of the 201 participants were Latina, 27% were white, 9% were Asian and 5% were African American. 37% did not attend college and 26% had household incomes of <$25,000. The mean age of the affected child was 6.4 years; 47% had autism. While 81% of the participants agreed that pregnant women should have the option of testing for their child’s condition, only 61% felt they would have prenatal testing. And although half (51%) agreed that pregnant women should be allowed to terminate their pregnancy for this condition, only 17.9% agreed that they would opt for termination in this context.  Multivariable logistic regression yielded Asian race/ethnicity (adjusted OR (aOR) 7.77, 95% CI 1.33-45.46; aOR 5.72, 95% CI 1.19-27.57) and endorsing the option of termination for the condition (aOR 4.80, 95% CI 2.07-11.12; aOR 13.77, 95% CI 3.51-53.93) as independent predictors of prenatal testing and termination inclinations respectively.  Latinos (aOR 4.44, 95% CI 1.00-19.70) and participants with lower life satisfaction scores also were more inclined toward pregnancy termination (aOR 0.20, 95% CI 0.07-0.59).

Conclusion: Parents of children with intellectual disabilities vary in their prenatal testing and pregnancy termination inclinations. Some of this variation is explained by general abortion attitudes, but life satisfaction also plays a role. As new tests for intellectual disabilities become available, guidelines should ensure that testing is available to women who desire it, while recognizing that many women prefer not to undergo testing or would not terminate their pregnancy if a disorder was diagnosed.