OBJECTIVE: To determine how parents of children with intellectual disabilities view prenatal testing and pregnancy termination for their child's condition. METHOD: We interviewed 201 English-speaking or Spanish-speaking caregivers of children aged 2 to 10 years. Primary outcomes were being disinclined to undergo prenatal testing or pregnancy termination for the child's condition in a future pregnancy. RESULTS: While only 33% of the sample indicated they would not have prenatal testing, 75% were disinclined to terminate their pregnancy if their fetus was affected. In multivariable logistic regression analysis, Asians were significantly less likely than White participants to say they would forego prenatal testing (adjusted odds ratio (aOR) = 0.08, 95% confidence interval (CI) = 0.01-0.86, p = 0.037), while Latinos had lower odds of being disinclined to terminate (aOR = 0.27, 95% CI = 0.07-0.99, p = 0.048). Participants who felt that abortion for their child's condition should not be available were more likely to say they would forego prenatal testing (aOR = 5.10, 95% CI = 2.09-12.43, p < 0.001) and, not surprisingly, they were also at higher odds of being disinclined to terminate pregnancy for this condition (aOR = 13.63, 95% = CI 4.19-44.34, p < 0.001). Greater life satisfaction also was associated with being disinclined to terminate pregnancy (aOR = 3.40, 95% CI = 1.34-8.61, p = 0.010). CONCLUSION: Although many parents of children with intellectual disabilities believe they would desire information regarding their fetus in a future pregnancy, most feel they would not opt to terminate their pregnancy. As new tests for intellectual disabilities become available, determining what would be most useful to prospective parents should become a high priority.
OBJECTIVE: To determine how parents of children with intellectual disabilities view prenatal testing and pregnancy termination for their child's condition. METHOD: We interviewed 201 English-speaking or Spanish-speaking caregivers of children aged 2 to 10 years. Primary outcomes were being disinclined to undergo prenatal testing or pregnancy termination for the child's condition in a future pregnancy. RESULTS: While only 33% of the sample indicated they would not have prenatal testing, 75% were disinclined to terminate their pregnancy if their fetus was affected. In multivariable logistic regression analysis, Asians were significantly less likely than White participants to say they would forego prenatal testing (adjusted odds ratio (aOR) = 0.08, 95% confidence interval (CI) = 0.01-0.86, p = 0.037), while Latinos had lower odds of being disinclined to terminate (aOR = 0.27, 95% CI = 0.07-0.99, p = 0.048). Participants who felt that abortion for their child's condition should not be available were more likely to say they would forego prenatal testing (aOR = 5.10, 95% CI = 2.09-12.43, p < 0.001) and, not surprisingly, they were also at higher odds of being disinclined to terminate pregnancy for this condition (aOR = 13.63, 95% = CI 4.19-44.34, p < 0.001). Greater life satisfaction also was associated with being disinclined to terminate pregnancy (aOR = 3.40, 95% CI = 1.34-8.61, p = 0.010). CONCLUSION: Although many parents of children with intellectual disabilities believe they would desire information regarding their fetus in a future pregnancy, most feel they would not opt to terminate their pregnancy. As new tests for intellectual disabilities become available, determining what would be most useful to prospective parents should become a high priority.
Authors: Neeta L Vora; Bradford Powell; Alicia Brandt; Natasha Strande; Emily Hardisty; Kelly Gilmore; Ann Katherine M Foreman; Kirk Wilhelmsen; Chris Bizon; Jason Reilly; Phil Owen; Cynthia M Powell; Debra Skinner; Christine Rini; Anne D Lyerly; Kim A Boggess; Karen Weck; Jonathan S Berg; James P Evans Journal: Genet Med Date: 2017-05-18 Impact factor: 8.822