ArticleGenetics in medicine : official journal of the American College of Medical Genetics2025
Parents' perceptions of the utility of genetic testing in the NICU.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Rare and resilient: Longer-term experiences of families after genetic evaluation in the neonatal intensive care unit.Genetics in medicine open · 2026Article
- Managing the Uncertainty of "Precision" While Navigating Goals of Care: A Framework for Collaborative Interpretation of Complex Genomic Testing Results in Critically-Ill Neonates.Children (Basel, Switzerland) · 2025Article
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Authors and funding
9 authors.
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Abstract
purposeAlthough several studies have evaluated the perspectives of parents in the neonatal intensive care unit on the utility of genetic testing in a research context and concluded with a positive appraisal, some data point to more varied perceptions.
methodsSemistructured interviews were conducted to elicit parental beliefs about the ways in which clinical (nonresearch) genetic testing could be both helpful and harmful.
resultsWe interviewed 43 parents of 36 neonates who were recommended and either accepted or declined to participate in clinical genetic testing. Parents described 5 types of problems they believed genetic information may address, what we term problem-solving contexts: treatment, coping, parenting, prognostic, and existential contexts. Most parents consider multiple problem-solving contexts when assessing benefits, which frequently results in ambivalence.
conclusionParents in the neonatal intensive care unit appear to be more ambivalent about the utility of genetic information than has been reflected in most recent studies. This discrepancy is likely related to our sample population, clinical rather than research methodology, which encouraged parents to discuss contexts beyond the medical field. Our findings suggest that informed pretest consent discussions and posttest counseling should encourage parents to discuss multiple problem-solving contexts. Researchers should also find ways to incorporate multiple contexts and diverse perspectives into their utility measures.
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