• Liat Ayalon.
• School of Social Work, Bar Ilan University, Ramat Gan, Israel. ayalonl@mail.biu.ac.il
• Am J Geriatr Psychiatry. 2009 Jan 1; 17 (1): 65-74.

ObjectivesTo evaluate public opinion about participation in Alzheimer disease (AD) research and willingness to have a proxy-informed consent.DesignCross-sectional.SettingA national survey of community-dwelling adults over the age of 50 and their spouse of any age.ParticipantsThe 2006 wave of the Health and Retirement Study (N = 1,517).MeasurementsWillingness to participate in one of four possible research scenarios and to have a proxy-informed consent for AD research.ResultsOverall, 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.ConclusionsMost 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.

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