ArticleGenetics in medicine : official journal of the American College of Medical Genetics2018
"Well, good luck with that": reactions to learning of increased genetic risk for Alzheimer disease.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04471779 (The IDEAL Study), which is not on this map. Cited by 21 papers, 1 of them a synthesis 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.
The IDEAL Study: Information About Alzheimer's Disease for Latinos in New York City
Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled 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
- Now is the time: the need to update guidance to expand access toFrontiers in dementia · 2026Article
- 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
- Anticipated Responses to Genetic Testing for Alzheimer's Disease Susceptibility among Latinos in Northern Manhattan.Journal of community health · 2025Article
- Patient perspectives after receiving simulated preconception polygenic risk scores (PRS) for family planning.Journal of assisted reproduction and genetics · 2025Article
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Pharmacogenetics or predictive genetics? APOE testing blurs the lines.Frontiers in pharmacology · 2025Review
- A survey study of Alzheimer's stigma among Black adults: intersectionality of Black identity and biomarker diagnosis.Ethnicity & health · 2024Article
- Interest in genetic susceptibility testing and disclosure of AD dementia risk in cognitively normal adults: a survey study.Alzheimer's research & therapy · 2024Article
- Interest in and Experience with Genetic Testing for Late-Onset Medical Conditions: Results from the National Poll on Healthy Aging.The journal of prevention of Alzheimer's disease · 2024Article
- Public perspective on medications to delay Alzheimer's disease symptoms.Journal of genetic counseling · 2023Article
- Communicating and Using Dementia Risk Evidence.Journal of Alzheimer's disease : JAD · 2022Article
- The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All.Journal of Alzheimer's disease : JAD · 2022Article
- Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.European journal of medical genetics · 2021Article
- 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).Journal of Alzheimer's disease : JAD · 2021Article
- Predictive testing for neurodegenerative diseases in the age of next-generation sequencing.Journal of genetic counseling · 2020Article
- Predictive Genetic Counseling for Neurodegenerative Diseases: Past, Present, and Future.Cold Spring Harbor perspectives in medicine · 2020Review
- Disclosing genetic risk for Alzheimer's dementia to individuals with mild cognitive impairment.Alzheimer's & dementia (New York, N. Y.) · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeApolipoprotein-E (APOE) genetic testing to estimate risk for developing late-onset Alzheimer disease is increasingly being offered without prior genetic counseling or preparation. Consumer interest continues to grow, raising the question of how best to conduct such testing.
methodsTwenty-six semistructured interviews were carried out to study the reactions of individuals who had already learned of their higher risk after APOE testing had been done because of a family history of Alzheimer disease, or from genetic tests done for other health-related or general-interest reasons.
resultsAdverse psychological reactions were reported by a substantial fraction of the participants, including those who had specifically sought testing, those for whom the information came as a surprise, those with a family history, and those with no known history. Still, nearly all of those interviewed said that they had benefited in the long term from lifestyle changes, often learned from online sources, that they subsequently made.
conclusionThe results show that people should be prepared prior to any genetic testing and allowed to opt out of particular tests. If testing is carried out and a higher risk is revealed, they should be actively assisted in deciding how to proceed.
Indexed as
Identifiers
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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.