An annotated bibliography of resources on the ethics of research with dementia patients.
By Stephen G. Post, Ph.D.
Of the five research centers that had their own written policies, all provided guidance on the selection of a surrogate decision maker. In each policy, a court-appointed guardian, if one exists, holds decisional authority. Next is a person indicated by the subject's durable power of attorney for health care, if such a document exists. Next, these centers use the next-of-kin hierarchy as set forth in their state's statute for health care decisions.
Four of these five centers indicate that a subject's dissent or unwillingness to participate in research must be honored. These centers allow carefully justified research with greater levels of risk when it holds potential benefit for the subject. If research does not hold potential benfits to subjects, it can still be conducted by surrogate consent as long as various protections are in place. This is in contrast to the Alzheimer's Association statement, which indicates a need for prior consent from the subject while competent, including the possibility of a research advance directive, for research that is not likely to benefit the subject and that goes beyond minimal risk.
From Research Ethics Module Supporting Pages