Affiliations: Department of Medicine, National Core for Neuroethics, Djavad Mowafaghian Centre for Brain Health, Division of Neurology, The University of British Columbia, Vancouver, BC, Canada
Correspondence:
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Correspondence to: Julie M. Robillard, PhD, Djavad Mowafaghian Centre for Brain Health, The University of British Columbia, 2215 Wesbrook Mall, Room 3450D, Vancouver, BC V6T 1Z3, Canada. Tel.: +1 604 827 0642; E-mail: jrobilla@mail.ubc.ca.
Abstract: The importance of patient engagement in research has been gaining recognition since the turn of the 21st century. However, little is known about the perspectives of people with dementia on the process of discovery. To fill this gap and to inform priorities in patient engagement in the context of dementia research, the Clinic for Alzheimer Disease and Related Disorders at the University of British Columbia hosted an interactive session for members of the patient community and of the general public to share their views on various ethical aspects of the research process. Results from the session indicate that several current research ethics policies and norms in dementia research are not in line with participants’ preferences. Here we discuss the importance of bridging the gap between researchers and patients and call for reforms in current standards of dementia research.
Keywords: Alzheimer’s disease, dementia, ethics, informed consent, public policy, research ethics
