Willingness to participate in alzheimer disease research and attitudes towards proxy-informed consent: Results from the health and retirement study

OBJECTIVES:: To evaluate public opinion about participation in Alzheimer disease (AD) research and willingness to have a proxy-informed consent. DESIGN:: Cross-sectional. SETTING:: A national survey of community-dwelling adults over the age of 50 and their spouse of any age. PARTICIPANTS:: The 2006 wave of the Health and Retirement Study (N = 1,517). MEASUREMENTS:: Willingness to participate in one of four possible research scenarios and to have a proxy-informed consent for AD research. RESULTS:: Overall, 65.8% agreed to participate in AD research and 70.7% agreed to proxy-informed consent. Relative to a minimal benefit and moderate risk scenario, participants were more likely to favor participation in a moderate benefit and minimal risk scenario and less likely to endorse a minimal benefit and severe risk scenario. Those agreeing to participate in the study were more likely to agree to proxy consent and to give leeway to a research proxy to go against their will. CONCLUSIONS:: Most participants view AD research favorably and are agreeable toward participating in such research as well as toward having a research proxy. Participants are able to distinguish between studies of different levels of benefit and risk. Nevertheless, over 50% agreed to a study of minimal benefit and severe risk. Researchers and clinicians should be aware that those less agreeable toward AD research are less interested in having a research proxy.