Ethics of disclosure of onset‐predictive biomarker test results for genetic frontotemporal dementia in the research context
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.
Authors
- Laura Donker Kaat (ORCID: https://orcid.org/0009-0007-2436-0931)
- Eline M. Bunnik (ORCID: https://orcid.org/0000-0003-1481-6222)
- Edo Richard (ORCID: https://orcid.org/0000-0002-7250-3390)
- Harro Seelaar (ORCID: https://orcid.org/0000-0003-1989-7527)
- John C. van Swieten
- Charlotte H Graafland (ORCID: https://orcid.org/0009-0000-2178-0032)
Institutions
- Radboud University Nijmegen (NL)
- Erasmus MC (NL)
- Radboud University Medical Center (NL)
- University of Amsterdam (NL)
Publication Details
- Journal
- Alzheimer s & Dementia Diagnosis Assessment & Disease Monitoring
- Published
- 2025-04-01
- DOI
- https://doi.org/10.1002/dad2.70133
- Citations
- 1
- Primary Topic
- Health Systems, Economic Evaluations, Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 3.13
Funders
- Association for Frontotemporal Degeneration
- ZonMw
- Erasmus Universitair Medisch Centrum Rotterdam