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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Detalles Bibliográficos
Autores principales: Cacioppo, Cara N., Chandler, Ariel E., Towne, Meghan C., Beggs, Alan H., Holm, Ingrid A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2016
Materias:
Research Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4833284/
https://www.ncbi.nlm.nih.gov/pubmed/27082877
http://dx.doi.org/10.1371/journal.pone.0153597

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4833284/
https://www.ncbi.nlm.nih.gov/pubmed/27082877
http://dx.doi.org/10.1371/journal.pone.0153597

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