Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete choice experiment

PURPOSE: Application of whole exome and whole genome sequencing is likely to increase in clinical practice, public health contexts, and research. We examined how parental preferences for learning information from genome-scale testing is influenced by the characteristics of non-medically actionable genetic disorders in children, and assessed if preferences differed by gender and between African-American and White respondents. METHODS: We conducted a web-based discrete choice experiment with 1 289 parents of young children. Participants completed “choice tasks” using pairs of profiles describing sequencing results for hypothetical genetic disorders, selected the profile they believed would be more important to know, and answered questions that measured their level of distress. RESULTS: The likelihood that the disorder would develop given a true-positive test result was most important to parents. Parents showed greater interest in learning sequencing results for disease profiles with more severe manifestations. This was associated with greater distress. Differences by gender and race reflected small differences in magnitude, not direction. CONCLUSION: Parents’ preferred learning results about genetic disorders with more severe manifestations, even when this knowledge was associated with increased distress. These results may help clinicians support parental decision making by revealing which types of sequencing results parents are interested in learning.