Journal article
Eliciting parental preferences and values for the return of additional findings from genomic sequencing
Ilias Goranitis, Yan Meng, Melissa Martyn, Stephanie Best, Sophie Bouffler, Yvonne Bombard, Clara Gaff, Zornitza Stark
npj Genomic Medicine | Nature Portfolio | Published : 2024
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 m..
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Grants
Awarded by National Health and Medical Research Council (NHMRC) grant
Awarded by Victorian Government's Operational Infrastructure Support Programme - Medical Research Futures Fund, Genomics Health Futures Mission
Funding Acknowledgements
Australian Genomics is funded by a National Health and Medical Research Council (NHMRC) grant (grant reference number 2000001). Melbourne Genomics Health Alliance is funded by the State Government of Victoria and ten member organisations. The research conducted at the Murdoch Children's Research Institute was supported by the Victorian Government's Operational Infrastructure Support Programme. The Additional Findings substudy of the Acute Care Genomics programme was funded by the Medical Research Futures Fund, Genomics Health Futures Mission (GHFM76747). Yvonne Bombard holds the Canada Research Chair in Genomics Health Services Research. This work represents independent research and the views expressed are those of the authors.