Study Explores Parents' Views of Children's Secondary Genetic Test Findings

For a study appearing in the journal Genetics in Medicine, investigators at the National Institutes of Health, University of Arkansas for Medical Sciences, and elsewhere take a look at parental impressions around secondary findings reported for children undergoing genetic testing. Using semistructured interviews with 40 parents from 30 families with children who had secondary findings on sequencing-based genetic tests, the team saw signs that parents "did not routinely conceptualize [secondary findings] as distinctive health information." Instead, the authors suggest, parents tended to view secondary findings "as health information rather than secondary health information" and most "did not raise autonomy concerns when deciding whether or not to disclose the information to their child or other family members.