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Full-Text Articles in Law
Access To Medical Records For Research Purposes: Varying Perceptions Across Research Ethics Boards, Donald Willison, Claudia Emerson, Karen Szala-Meneok, Elaine Gibson, Lisa Schwartz, Karen Weisbaum, François Fournier, Kevin Brazil, Michael Coughlin
Access To Medical Records For Research Purposes: Varying Perceptions Across Research Ethics Boards, Donald Willison, Claudia Emerson, Karen Szala-Meneok, Elaine Gibson, Lisa Schwartz, Karen Weisbaum, François Fournier, Kevin Brazil, Michael Coughlin
Articles, Book Chapters, & Popular Press
Variation across research ethics boards (REBs) in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy. Aim: To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction. Methods: Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions around a case study with open-ended responses. Interviews were recorded, transcribed and coded manually. Results: Fourteen sites (47%) required individual patient …
The Therapeutic Misconception: A Threat To Valid Parental Consent For Paediatric Neuroimaging Research, Michael Hadskis, Nuala Kenny, Jocelyn Downie, Matthias Schmidt, Ryan D'Arcy
The Therapeutic Misconception: A Threat To Valid Parental Consent For Paediatric Neuroimaging Research, Michael Hadskis, Nuala Kenny, Jocelyn Downie, Matthias Schmidt, Ryan D'Arcy
Articles, Book Chapters, & Popular Press
Neuroimaging research has brought major advances to child health and well-being. However, because of the vulnerabilities associated with neurological and developmental conditions, the parental need for hope, and the expectation of parents that new medical advances can benefit their child, pediatric neuroimaging research presents significant challenges to the general problem of consent in the context of research involving children. A particular challenge in this domain is created by the presence of therapeutic misconception on the part of parents and other key research stakeholders. This article reviews the concept of therapeutic misconception and its role in pediatric neuroimaging research. It argues …