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 |
Authors | Ayalon, L |
Journal | Am J Geriatr Psychiatry |
Volume | 17 |
Issue | 1 |
Pagination | 65-74 |
Date Published | 2009 Jan |
ISSN Number | 1545-7214 |
Call Number | newpubs20081014_AJGP |
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 |
Abstract | 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. |
DOI | 10.1097/JGP.0b013e31818cd3d3 |
User Guide Notes | |
Endnote Keywords | Dementia |
Endnote ID | 19310 |
Alternate Journal | Am J Geriatr Psychiatry |
Citation Key | 7314 |
PubMed ID | 19092313 |