期刊
NEUROLOGY
卷 77, 期 24, 页码 2097-2104出版社
LIPPINCOTT WILLIAMS & WILKINS
DOI: 10.1212/WNL.0b013e31823648cb
关键词
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资金
- NIH [R01AG029550]
- Greenwall Foundation
- NIH (NIMH)
- NIH (NIA)
- NIH (NINDS)
- NIH (NINR)
- NIH (NIDA)
- US Department of Veterans Affairs
- Elan/Janssen AI
- Baxter International Inc.
- Forest Laboratories, Inc.
- NIH
- National Library of Medicine
- NIH (NIGMS)
- NIH (NICHD)
- Robert Wood Johnson Foundation
- European Commission/University of Geneva
- NIH (NCI)
- NIH (NCRR)
- NIH (NHGRI)
Objective: To assess the informed, deliberative views of the older general public toward a policy of allowing surrogate consent for Alzheimer disease (AD) research. Methods: A total of 503 persons aged 50+ recruited by random digit dialing were randomly assigned to 1 of 3 groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after deliberation session (or equivalent time), and 1 month after the session, regarding their attitudes toward a policy of allowing surrogate consent for research studies of varying risks and potential benefits (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). Results: At baseline, a policy of surrogate consent for AD research was supported by 55%-91%, depending on the scenario. The education group had a transient increase in support for one research scenario after receiving the information materials. In the deliberation group, support for surrogate consent was higher after deliberation for all scenarios (67% to 97%), with much of the increase sustained 1 month after the deliberation session. No changes occurred in the control group. The study's limitations include self-selection of participants due to the demanding nature of attendance at the deliberation sessions. Conclusions: This sample of the older general public generally supported a policy of surrogate consent for AD research at baseline. Their support increased with democratic deliberation involving informed, in-depth exploration of the relevant scientific and ethical issues. Neurology (R) 2011; 77: 2097-2104
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