|Title||Willingness to participate in Alzheimer disease research and attitudes towards proxy-informed consent: results from the Health and Retirement Study.|
|Publication Type||Journal Article|
|Year of Publication||2009|
|Journal||Am J Geriatr Psychiatry|
|Date Published||2009 Jan|
|Keywords||Alzheimer disease, Attitude, Community Participation, Cross-Sectional Studies, Female, Human Experimentation, Humans, Informed Consent, Male, Middle Aged, Public Opinion, Risk Assessment, Third-Party Consent|
OBJECTIVES: To evaluate public opinion about participation in Alzheimer disease (AD) research and willingness to have a proxy-informed consent.
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.
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|Alternate Journal||Am J Geriatr Psychiatry|