Who Provides Informed Consent?
While informed consent from the research subject is possible when he or she is competent to give it, many persons with AD are no longer able to provide consent by the time they are diagnosed and could potentially be entered into a research program. Rather than deny these persons access to new treatments that are being studied, researchers usually proceed by surrogate consent, i.e., another person, generally the primary caregiver, consents on behalf of the subject. (A notable exception to this rule is the National Institute of Aging, which requires that researchers on its own premises gain the direct consent of the prospective subject while competent to do so for all forms of AD research.) The Alzheimer’s Association is dedicated to research to conquer AD and to providing support and assistance to people with the disease, their families and caregivers. The Association strongly endorses surrogate consent. Toward this end, the Association has approved a statement, Ethical Issues in Dement
