"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.
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).
Author(s): Andrews, Sara M, Raspa, Melissa, Edwards, Anne, Moultrie, Rebecca, Turner-Brown, Lauren, Wagner, Laura, Alvarez Rivas, Alexandra, Frisch, Mary Katherine, Wheeler, Anne C
DOI: 10.1093/jamia/ocz208