ArticleJournal of Alzheimer's disease : JAD2021
Disclosing Genetic Risk of Alzheimer's Disease to Cognitively Unimpaired Older Adults: Findings from the Study of Knowledge and Reactions to APOE Testing (SOKRATES II).
Article in Journal of Alzheimer's disease : JAD, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 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
24 citing papers in PubMed, 2 syntheses or guidelines pooled it, 27 citations in OpenAlex.
- Ethical issues in genomics research in persons with Alzheimer's Disease/Alzheimer's Disease-related dementia (AD/ADRD): a systematic review.BMC medical ethics · 2024Pooled it
- Persons With Cognitive Impairment and Care Partner Motivations and Experiences of Undergoing an Amyloid Scan: A Systematic Review of Qualitative Studies.The Gerontologist · 2024Pooled it
- 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
- Tele-Genetic Versus Onsite Counseling for APOE Disclosure: A 6-Month Study of Empowerment, Psychological Distress, and Behavioral Outcomes in Cognitively Diverse Individuals.The journal of gene medicine · 2025Trial
- Reciprocity in research: Participant views on return of results in the WATCH-PD qualitative study.Journal of Parkinson's disease · 2026Article
- Numeracy and recall of Alzheimer's disease risk information: Effects of risk format in a Latino community.Patient education and counseling · 2026Article
- Learning about a heightened genetic risk for dementia: Expected stigma is greater than experienced stigma.Psychology and aging · 2026Article
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- The landscape of dementia research, diagnosis, treatment, and care in Latin America.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Review
- Apoe genotype knowledge and its impact on cognitive beliefs and performance.Neuropsychology, development, and cognition. Section B, Aging, neuropsychology and cognition · 2026Article
- Now is the time: the need to update guidance to expand access toFrontiers in dementia · 2026Article
- The impact of rare genetic variants on Alzheimer disease.Nature reviews. Neurology · 2025Review
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Apolipoprotein E in Alzheimer's disease trajectories and the next-generation clinical care pathway.Nature neuroscience · 2024Review
- Alzheimer's in the modern age: Ethical challenges in the use of digital monitoring to identify cognitive changes.Informatics for health & social care · 2024Article
- A Conceptual Model to Achieve Health Equity in APOL-1 Clinical Studies.Health equity · 2024Article
- A Pragmatic, Investigator-Driven Process for Disclosure of Amyloid PET Scan Results to ADNI-4 Research Participants.The journal of prevention of Alzheimer's disease · 2024Article
- Article
- Dementia prevention in memory clinics: recommendations from the European task force for brain health services.The Lancet regional health. Europe · 2023Review
- Disclosure of Genetic Risk Factors for Alzheimer's Disease to Cognitively Healthy Individuals-From Current Practice towards a Personalised Medicine Scenario.Biomedicines · 2022Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundCurrent practice guidelines recommend against Apolipoprotein E (APOE) testing. However, advances in Alzheimer's disease (AD) research and care may soon change this.
objectiveTo examine longitudinally the experience of learning an APOE result and, if an ɛ4 carrier, taking a disease-specific treatment to reduce one's risk of AD.
methodsFifty ɛ4 carriers and 20 non-carriers completed semi-structured interviews 3 months and 15 months after APOE disclosure.
resultsIndividuals generally understand their APOE results. While non-carriers felt relief, ɛ4 carriers often described themselves as disappointed by their result but nevertheless glad to know. Carriers expressed concerns about stigma and discrimination, including in the workplace. Carriers adopted new health behaviors at higher rates than non-carriers and revised their future plans to account for their increased risk of AD. Individuals participating in research were hopeful that their participation would help them or others; individuals who learned they were at increased risk for AD but who could not participate in research were disappointed.
conclusionProviders disclosing APOE results should be sensitive to how APOE results shape emotions, self-perceptions, and attitudes about memory; raise concerns about stigma and discrimination in personal and professional relationships; influence health behaviors and decision-making; and can have follow-on effects on family members.
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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.