Parents' Perceptions of the Utility of Genetic Testing in the NICU.

Abstract

Background and objectives: While several studies have evaluated neonatal intensive care unit (NICU) parents' perspective on the utility of genetic testing in a research context and concluded positive appraisal, some data point to more varied perceptions.

Methods: We conducted semi-structured interviews to elicit NICU parents' beliefs about the ways in which clinical (non-research) genetic testing could be both helpful and harmful.

Results: We interviewed 43 parents of 36 neonates who had been recommended, and either accepted or declined, clinical genetic testing. Parents described five types of problems they believed genetic information may address, what we term "problem-solving contexts:" treatment, coping, parenting, prognostic, and existential contexts. Most parents considered multiple problem-solving contexts in assessing benefit, frequently resulting in ambivalence.

Conclusions: Parents in the NICU appear to be more ambivalent about the utility of genetic information than is reflected in most recent studies. This discrepancy is likely related to both our sample population, clinical rather than research, and our methodology, which encouraged parents to discuss contexts beyond the medical. Our findings suggest that informed pre-test consent discussions and post-test counseling should engage parents in discussing multiple problem-solving contexts. Researchers should also find ways to incorporate these multiple contexts, and diverse perspectives within each context, into utility measures.