ArticleAlzheimer's & dementia (Amsterdam, Netherlands)
Ethics of disclosure of onset-predictive biomarker test results for genetic frontotemporal dementia in the research context.
Article in Alzheimer's & dementia (Amsterdam, Netherlands). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 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
4 citing papers in PubMed.
- Impact of awareness of genetic status on cognitive, behavioral, and neuropsychiatric outcomes in genetic frontotemporal dementia.Journal of neurology · 2026Article
- Disclosure of onset-predictive biomarker results to research participants at risk of genetic frontotemporal dementia: a European perspective.Alzheimer's research & therapy · 2025Review
- Ethics of disclosure of onset-predictive biomarker test results for genetic frontotemporal dementia in the research context.Alzheimer's & dementia (Amsterdam, Netherlands)Article
- Introduction to the special issue on ethics and equity in implementing novel biomarkers for Alzheimer's disease and related dementias: current progress and new directions.Alzheimer's & dementia (Amsterdam, Netherlands)Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Onset-predictive biomarker tests (OPBTs) for genetic frontotemporal dementia (FTD) may predict symptom onset in coming years. OPBT results could be used as inclusion criterion for clinical trials for FTD, but this requires disclosure of OPBT results to potential participants for informed consent. This creates a dilemma, as disclosure may be psychologically burdensome. Yet, individuals at risk of FTD may value OPBTs to relieve uncertainty and support planning for the future. This article provides an overview of considerations regarding disclosure using four themes (actionability, respect for autonomy and informed consent, psychological impact, social and societal impact), based on literature on return of individual research results and biomarker disclosure in Alzheimer's disease. Based on this, we argue that clinical validity and context of use are important considerations, and suggest that (1) counseling facilitates informed decision making, (2) clinical and psychological follow-up provides necessary support, and (3) impacts may be monitored in a pilot study. Highlights: Ethical considerations regarding disclosure of onset-predictive biomarker test (OPBT) results include actionability, respect for autonomy and informed consent, psychological impact, and social and societal impact.The weight of each consideration depends heavily on the clinical validity of the OPBT results and the context of use.OPBT result disclosure to individuals at risk of genetic frontotemporal dementia (FTD) for clinical trial recruitment seems ethically acceptable.We suggest embedding OPBT results disclosure in counseling, follow-up, and a pilot study on impacts of OPBT results disclosure.
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Registered trials
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