Parents Divided on Screening for Conditions without Cure

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[Source: Disability Scoop]

Most moms want their newborns to be tested for fragile X syndrome, but a significant number of parents remain reluctant to find out if their children have the disability, new research suggests.

In a study of more 2,000 mothers in North Carolina, researchers asked why they did or did not agree to have their newborns screened for the FMR1 gene, which is responsible for fragile X.

Overall, nearly two out of three parents agreed to have their babies tested. Black mothers were least likely to consent to the screening while those with graduate degrees were more likely than parents with only a high school diploma to consent, according to the study published this week in the journal Pediatrics.

Most who agreed to have their children tested said they did so because the wanted “to know.” But among those who declined the screening the reasons varied, with some saying they didn’t want to worry or preferred not to know and others expressing negative opinions about genetic testing.

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