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Effect of public deliberation on attitudes toward surrogate consent for dementia research
Kim SY, Kim HM, Knopman DS, De Vries R, Damschroder L, Appelbaum PS.. Neurology, 2011-10-05
Topic: Risk, prevention and care in population studies
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.
Key findings
- Results At baseline, a policy of surrogate consent for AD research was supported by 55%-91%, depending on the scenario.
Why it matters
After an all-day education and peer deliberation session, older adults showed higher support for allowing surrogate consent for Alzheimer's disease research across several scenarios. This is about research policy and consent, not about treating, curing, or preventing the disease.
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Study details
- Study designrandomized controlled trial
- Participants503
- Evidence strengthHigh
How this study scored 61/100
Published in a leading specialty journal, and it is a randomised controlled trial. Scored zero for effect reported because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 9 / 10 | Tier 2 — leading specialty journal (Neurology) |
| Journal's citation record | 4 / 4 | Neurology: journal h-index 525 (OpenAlex, 2026-10-29) |
| Study design | 11 / 12 | A randomised controlled trial |
| Strength of evidence | 5 / 5 | Rated “high” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 1 / 5 | 2011 — within 20 year(s) of the newest study here |
| Sample size | 2 / 4 | 503 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 1 / 2 | Randomised (as stated in the record) |
| Times cited | 3 / 7 | Cited 33 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 1.9 citations a year over 17 year(s) since 2011 |
| Impact for its field and year | 2 / 6 | Cited 2.4× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 0 / 4 | Cited 2 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Paul S. Appelbaum: h-index 82 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University of Michigan: institution h-index 2,240 (OpenAlex) |
| Multi-centre collaboration | 2 / 3 | OpenAlex lists 4 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 21975207) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Total | 61 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1212/wnl.0b013e31823648cb
- PubMed: 21975207
- Original source →
- Free full text: PubMed Central →
Full text: free to read — PubMed Central lists this copy as free to read: the link above (checked 10 Oct 2026).
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
APA 7th
Kim, S. Y., Kim, H. M., Knopman, D. S., De Vries, R., Damschroder, L., & Appelbaum, P. S. (2011). Effect of public deliberation on attitudes toward surrogate consent for dementia research. Neurology. https://doi.org/10.1212/wnl.0b013e31823648cb
Vancouver
Kim SY, Kim HM, Knopman DS, De Vries R, Damschroder L, Appelbaum PS. Effect of public deliberation on attitudes toward surrogate consent for dementia research. Neurology. 2011. doi:10.1212/wnl.0b013e31823648cb. PMID: 21975207.
BibTeX
@article{kim2011-21975207,
author = {Kim, S. Y. and Kim, H. M. and Knopman, D. S. and De Vries, R. and Damschroder, L. and Appelbaum, P. S.},
title = {{Effect of public deliberation on attitudes toward surrogate consent for dementia research}},
journal = {Neurology},
year = {2011},
doi = {10.1212/wnl.0b013e31823648cb},
pmid = {21975207},
url = {https://doi.org/10.1212/wnl.0b013e31823648cb}
}
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