When Patient Engagement and Research Ethics Collide: Lessons from a Dementia Forum

J Alzheimers Dis. 2017;59(1):1-10. doi: 10.3233/JAD-161285.

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.

MeSH terms

  • Biomedical Research / ethics*
  • Dementia* / diagnosis
  • Dementia* / psychology
  • Dementia* / therapy
  • Ethics, Research*
  • Female
  • Humans
  • Information Dissemination / ethics
  • Informed Consent / ethics
  • Male
  • Patient Participation*