Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases

PURPOSE: To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases. METHODS: Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montr...

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Detalhes bibliográficos
Main Authors: Kleiderman, Erika, Knoppers, Bartha Maria, Fernandez, Conrad V, Boycott, Kym M, Ouellette, Gail, Wong-Rieger, Durhane, Adam, Shelin, Richer, Julie, Avard, Denise
Formato: Artigo
Idioma:Inglês
Publicado em: BMJ Publishing Group 2014
Assuntos:
Research Ethics
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC4173986/
https://ncbi.nlm.nih.gov/pubmed/24356209
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1136/medethics-2013-101648
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