Trial reportGenetics in medicine : official journal of the American College of Medical Genetics2010
"I know what you told me, but this is what I think:" perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate.
Trial report in Genetics in medicine : official journal of the American College of Medical Genetics, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 5 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
48 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- Knowledge and perception of dementia risk and protective factors: a systematic review and meta-analysis.The journal of prevention of Alzheimer's disease · 2026Pooled it
- Considerations regarding a diagnosis of Alzheimer's disease before dementia: a systematic review.Alzheimer's research & therapy · 2022Pooled it
- Clinical implications of APOE genotyping for late-onset Alzheimer's disease (LOAD) risk estimation: a review of the literature.Journal of neural transmission (Vienna, Austria : 1996) · 2019Pooled it
- Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review.Alzheimer's research & therapy · 2016Pooled it
- Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors.Genetics in medicine : official journal of the American College of Medical Genetics · 2011Guideline
- Psychological impacts of APOE genotype disclosure among Latinos in New York City: a randomized controlled trial.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Trial
- CONNECT4 APOE: A randomized trial of telephone versus real-time two-way videoconference for disclosure of APOE genotype results in cognitively unimpaired adults.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Trial
- Effect of gamification with a support partner to increase physical activity in older adults at risk for Alzheimer's disease: The STEP 4Life randomized clinical trial.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Trial
- Effect of communicating personalized rheumatoid arthritis risk on concern for developing RA: A randomized controlled trial.Patient education and counseling · 2019Trial
- Factors affecting recall of different types of personal genetic information about Alzheimer's disease risk: the REVEAL study.Public health genomics · 2015Trial
- Impact of delivery models on understanding genomic risk for type 2 diabetes.Public health genomics · 2014Trial
- Impact of learning APOE genotype on cognitively unimpaired adults: a pre-screening cohort study of the Alzheimer's Prevention Initiative Generation Study 1.The lancet. Healthy longevity · 2025Article
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Intervention Development for Tailored Education for Aging and Cognitive Health (TEACH) for Dementia Prevention in Midlife Adults: Protocol for a Randomized Controlled Trial.JMIR research protocols · 2024Article
- The Return of Biomarker Results in Research: Balancing Complexity, Precision, and Ethical Responsibility.Journal of Alzheimer's disease : JAD · 2024Review
- Testing Explanations for Skepticism of Personalized Risk Information.Medical decision making : an international journal of the Society for Medical Decision Making · 2023Article
- Lack of reassurance after unexpected positive health risk feedback - an analysis of temporal dynamics.Health psychology and behavioral medicine · 2021Article
- Pilot study of an Alzheimer's disease risk assessment program in a primary care setting.Alzheimer's & dementia (Amsterdam, Netherlands) · 2021Article
- Translating Cancer Risk Prediction Models into Personalized Cancer Risk Assessment Tools: Stumbling Blocks and Strategies for Success.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2020Article
- Predictive Genetic Counseling for Neurodegenerative Diseases: Past, Present, and Future.Cold Spring Harbor perspectives in medicine · 2020Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
purposeThis study evaluates the Alzheimer disease risk perceptions of individuals who accurately recall their genetics-based Alzheimer disease risk assessment.
methodsTwo hundred forty-six unaffected first-degree relatives of patients with Alzheimer disease were enrolled in a multisite randomized controlled trial examining the effects of communicating APOE genotype and lifetime Alzheimer disease risk information.
resultsAmong the 158 participants who accurately recalled their Alzheimer disease risk assessment 6 weeks after risk disclosure, 75 (47.5%) believed their Alzheimer disease risk was more than 5% points different from the Alzheimer disease risk estimate they were given. Within this subgroup, 69.3% believed that their Alzheimer disease risk was higher than what they were told (discordant high), whereas 30.7% believed that their Alzheimer disease risk was lower (discordant low). Participants with a higher baseline risk perception were more likely to have a discordant-high risk perception (P < 0.05). Participants in the discordant-low group were more likely to be APOE epsilon4 positive (P < 0.05) and to score higher on an Alzheimer disease controllability scale (P < 0.05).
conclusionOur results indicate that even among individuals who accurately recall their Alzheimer disease risk assessment, many people do not take communicated risk estimates at face value. Further exploration of this clinically relevant response to risk information is warranted.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.