Parents’ perceptions of the utility of genetic testing in the NICU

Abstract

Purpose

Although 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.

Methods

Semistructured interviews were conducted to elicit parental beliefs about the ways in which clinical (nonresearch) genetic testing could be both helpful and harmful.

Results

We 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.

Conclusion

Parents 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.