Physicians interested in drawing up a research proxy, Dr. Kim said, should work with their institutional review boards to devise a format that includes information about the types of research and the degree of risk the patient is willing to undergo. Since not every circumstance can be foreseen, Dr. Kim recommended leaving some flexibility in these documents to be used “only as guidance, not as a hard and fast rule.”
As genetic underpinnings are being found for more and more neurodegenerative diseases, a greater number of patients will be offered the opportunity for research participation. For Dr. Kim, the research proxy offers a path to participation in research for many of these patients. “Even after the diagnosis of Alzheimer’s disease, it is usually possible to obtain a valid proxy directive. As much as possible, involve the patient with dementia in the decision-making process; there are many, retained, preserved abilities that are ethically relevant.”
Dr. Kim’s study was supported by a grant from the National Institute of Mental Health.
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