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What do people at risk for Alzheimer disease think about surrogate consent for research?
Kim SY, Kim HM, McCallum C, Tariot PN.. Neurology, 2005-11-01
Topic: Amyloid, tau and blood-test diagnosis
Background Research involving decisionally incapable adults remains an unsettled and controversial policy issue, especially for protocols that involve significant risk to participants. Few data exist to guide policymakers and IRBs Objective Survey the views of persons at heightened risk for dementia regarding the acceptability of surrogate consent for biomedical research of varying levels of risks and potential benefits. Methods Using a mail survey, the authors surveyed the participants at one of the sites of the Alzheimer's Disease Anti-inflammatory Prevention Trial (all participants are 70 years old or older with at least one first-degree relative with dementia) and measured responses regarding the acceptability of surrogate consent for 10 research scenarios of varying degrees of risks and benefits (ranging from an observation study to a gene transfer protocol), given from the perspectives of social policy, personal preferences for self, and preferences when deciding on behalf of a loved one. Results Two hundred twenty-nine of 259 eligible participants responded (88%). A large majority (>90%) found minimal risk studies as well as randomized clinical trials of new medications acceptable for surrogate consent. A smaller majority found the more invasive studies acceptable. Participants were more cautious when deciding for a loved one. General attitude toward biomedical research and scenario-specific risk perception were strong independent predictors. Demographic and personal history variables had relatively little effect. Conclusions Laypersons at heightened risk of Alzheimer disease discriminate among research scenarios of varying risks and burdens. They are supportive of surrogate consent-based research even when the risks and burdens are significant to the subjects; these opinions appear to be based in part on their assessment of risks as well as on their general attitude toward biomedical research.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Kim, S. Y., Kim, H. M., McCallum, C., & Tariot, P. N. (2005). What do people at risk for Alzheimer disease think about surrogate consent for research? Neurology. https://doi.org/10.1212/01.wnl.0000183144.61428.73
Vancouver
Kim SY, Kim HM, McCallum C, Tariot PN. What do people at risk for Alzheimer disease think about surrogate consent for research? Neurology. 2005. doi:10.1212/01.wnl.0000183144.61428.73. PMID: 16275826.
BibTeX
@article{kim2005-16275826,
author = {Kim, S. Y. and Kim, H. M. and McCallum, C. and Tariot, P. N.},
title = {{What do people at risk for Alzheimer disease think about surrogate consent for research?}},
journal = {Neurology},
year = {2005},
doi = {10.1212/01.wnl.0000183144.61428.73},
pmid = {16275826},
url = {https://doi.org/10.1212/01.wnl.0000183144.61428.73}
}
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Key findings
- Background Research involving decisionally incapable adults remains an unsettled and controversial policy issue, especially for protocols that involve significant risk to participants.
- Results Two hundred twenty-nine of 259 eligible participants responded (88%).
- They are supportive of surrogate consent-based research even when the risks and burdens are significant to the subjects; these opinions appear to be based in part on their assessment of risks as well as on their general attitude toward biomedical research.
Why it matters
In a survey of 229 people at heightened risk for dementia, a large majority found minimal risk studies and randomized trials of new medications acceptable for surrogate consent, while a smaller majority found more invasive studies acceptable. This is about attitudes toward research consent, not about treating, curing, or preventing Alzheimer's disease.
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Study details
- Evidence strengthHigh
How this study scored 49/100
Published in a leading specialty journal. Scored zero for study design, sample size, effect reported, studied in people and randomized / blinded 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 | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| 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 | 2005 — older than 20 years, still counted |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomized / blinded | 0 / 2 | No randomization or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 4 / 7 | Cited 79 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 3.4 citations a year over 23 year(s) since 2005 |
| Impact for its field and year | 3 / 6 | Cited 4.9× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 1 / 6 | Cited by 2 other studies in this library |
| Still being cited | 1 / 4 | Cited 5 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 4 / 4 | Last-listed author Pierre N. Tariot: h-index 102 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University of Michigan: institution h-index 2,240 (OpenAlex) |
| Multicenter collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 16275826) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Total | 49 / 100 | — |
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