Disclosure of onset-predictive biomarker results to research participants at risk of genetic frontotemporal dementia: a European perspective.

ABSTRACT:

Background

As understanding of biomarkers for genetic frontotemporal dementia (FTD) advances, there is a need to develop onset-predictive biomarker tests (OPBTs) to detect changes before the onset of symptoms. OPBTs can be used to recruit carriers or individuals at 50% risk of carriership into clinical trials of investigational therapies targeting the preclinical and prodromal phases of FTD. OPBT results should be disclosed as part of the informed consent process, with positive results indicating that symptom onset is likely in the next few years. This information can be psychologically burdensome, especially in individuals at 50% risk, for whom a positive OPBT result would reveal their genetic status. There is a need for ethical guidance for disclosure processes to help researcher

SUBMITTER: Graafland CH 

PROVIDER: S-EPMC12817822 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature