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Should We Conduct Research on Persons with Dementia

Michael Gordon, MD, MSc, FRCPC
Vice President of Medical Services,
Baycrest Centre for Geriatric Care,
Professor of Medicine,
University of Toronto,
Toronto, ON.

The husband looked to his wife when he was asked if he would allow me to refer him to participate in a research trial. He admitted that he had some "memory" problems but was not really aware of the degree of his cognitive decline. His wife said she would consider it and discuss it with her husband and their children. She was distraught about the diagnosis of Alzheimer's disease and the future implications for his function and the requirements for his care. She wanted to know if the trial might help him. I explained the principles of a double-blind randomized drug trial and suggested that she discuss her concerns with the researcher conducting it.

Without research there is no progress in Medicine. Most people support the concepts of, and need for, medical research. Throughout history, some form of medical research has occurred. As an outcome of the horrific experiments done on involuntary subjects during the Nazi regime, and the more contemporary American studies on poor black syphilis victims in the Tuskegee experiment and the Willowbrook hepatitis study, a more rigorous and protective approach to human research has been developed.

Contemporary medical researchers are expected to understand the basic ethical principles that govern clinical research.