Eliciting parental preferences and values for the return of additional findings from genomic sequencing.

ABSTRACT: Health economic evidence is needed to inform the design of high-value and cost-effective processes for returning genomic results from analyses for additional findings (AF). This study reports the results of a discrete-choice experiment designed to elicit preferences for the process of returning AF results from the perspective of parents of children with rare conditions and to estimate the value placed on AF analysis. Overall, 94 parents recruited within the Australian Genomics and Melbourne Genomics programmes participated in the survey, providing preferences in a total of 1128 choice scenarios. Statistically significant preferences were identified for the opportunity to change the choices made about AF; receiving positive AF in person from a genetic counsellor; timely access to a medical

SUBMITTER: Goranitis I 

PROVIDER: S-EPMC10867021 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature