“Just tell me what’s going on”: The views of parents of children with genetic conditions regarding the research use of their child’s electronic health record

OBJECTIVE: The purpose of this study was to understand the ethical, legal, and social issues described by parents of children with known or suspected genetic conditions that cause intellectual and developmental disabilities regarding research use of their child’s electronic health record (EHR). MATE...

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Dades bibliogràfiques
Publicat a:J Am Med Inform Assoc
Autors principals: Andrews, Sara M, Raspa, Melissa, Edwards, Anne, Moultrie, Rebecca, Turner-Brown, Lauren, Wagner, Laura, Alvarez Rivas, Alexandra, Frisch, Mary Katherine, Wheeler, Anne C
Format: Artigo
Idioma:Inglês
Publicat: Oxford University Press 2020
Matèries:
Research and Applications
Accés en línia:https://ncbi.nlm.nih.gov/pmc/articles/PMC7025353/
https://ncbi.nlm.nih.gov/pubmed/31913479
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1093/jamia/ocz208
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