ArticleEuropean journal of medical genetics2021
Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.
Article in European journal of medical genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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.
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Who cites it
11 citing papers in PubMed, 18 citations in OpenAlex.
- Living in a genetic penumbra: navigating uncertainty and morality.Journal of community genetics · 2026Article
- Parental Perceptions of Benefits and Risks Concerning Mental Health Biomarker Testing for Adolescents.Community mental health journal · 2026Article
- Acceptability, consideration, intention, and uptake of six common types of direct-to-consumer genetic tests in the Netherlands.Journal of genetic counseling · 2025Article
- Prevalence of Pathogenic Variants and Eligibility Criteria for Genetic Testing in Patients Who Visit a Memory Clinic.Neurology · 2025Article
- Changes in acceptability, consideration, intention, and uptake of direct-to-consumer genetic tests in the Netherlands from 2017 to 2022.Journal of genetic counseling · 2025Article
- Advertisement by medical facilities as an opportunity route of APOE genetic testing in Japan: a website analysis.Journal of community genetics · 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
- Disclosure of Genetic Risk Factors for Alzheimer's Disease to Cognitively Healthy Individuals-From Current Practice towards a Personalised Medicine Scenario.Biomedicines · 2022Review
- Data sharing in the age of predictive psychiatry: an adolescent perspective.Evidence-based mental health · 2022Article
- Geriatricians' Perspectives on the Multiple Dimensions of Utility of Genetic Testing for Alzheimer's Disease: A Qualitative Study.Journal of Alzheimer's disease : JAD · 2022Article
- Cost-benefit of dementia insurance for cognitively-unimpairedJournal of Alzheimer's disease reportsArticle
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
purposeSince the U.S. Food and Drug Administration approved sales of genetic tests for late-onset Alzheimer's disease (LOAD) risk, a heated debate has arisen over whether these tests should indeed be offered online and direct-to-consumer (DTC). As this debate progresses, it is important to understand the ethical perspectives and motivations of young people, who are a key target group for DTC services.
methodsThirty-one grandchildren of people with LOAD, aged 16-26, were interviewed about their moral attitudes and motivations with regards to DTC genetic testing for LOAD.
resultsEven though most participants claimed that people should have the right to access these services, they also expressed concerns about potential distress in response to learning about risk, particularly for minors. About a third were interested in testing, primarily to gain self-knowledge regarding one's health; however, face-to-face services were vastly preferred over the online option.
conclusionWhile DTC genetic companies often market their services as a "fun consumer product", DTC testing for LOAD was largely understood as a serious health screening procedure and a vulnerable moment in the lives of young people in Alzheimer's families. This points to the importance of appropriate standards of information and support to young people pre- and post-testing.
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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.