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Expectation versus Reality: The Impact of Utility on Emotional Outcomes after Returning Individualized Genetic Research Results in Pediatric Rare Disease Research, a Qualitative Interview Study

PURPOSE: Much information on parental perspectives on the return of individual research results (IRR) in pediatric genomic research is based on hypothetical rather than actual IRR. Our aim was to understand how the expected utility to parents who received IRR on their child from a genetic research s...

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Bibliografiske detaljer
Udgivet i:PLoS One
Main Authors: Cacioppo, Cara N., Chandler, Ariel E., Towne, Meghan C., Beggs, Alan H., Holm, Ingrid A.
Format: Artigo
Sprog:Inglês
Udgivet: Public Library of Science 2016
Fag:
Online adgang:https://ncbi.nlm.nih.gov/pmc/articles/PMC4833284/
https://ncbi.nlm.nih.gov/pubmed/27082877
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1371/journal.pone.0153597
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