“It seems enormously valuable to me.” Perspectives of Dutch (potential) carriers of genetic FTD on onset-predictive biomarker testing
Dutch presymptomatic mutation carriers and individuals at 50% risk of developing genetic FTD tend to be willing to receive OPBT results. The results would allow for participation in a clinical trial and preparation for onset through personal life planning. At the same time, disclosure of OPBT results might have negative psychological consequences. This study provides valuable input for developing ethical guidance and an appropriate counselling process to ensure responsible disclosure of OPBT results with clinical trial recruitment.
Authors
- John Cornelis Van Swieten (ORCID: https://orcid.org/0000-0001-6278-6844)
- 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)
- Jackie M. Poos (ORCID: https://orcid.org/0000-0001-8843-7247)
- Lize C. Jiskoot (ORCID: https://orcid.org/0000-0002-1120-1858)
- Maartje Schermer (ORCID: https://orcid.org/0000-0003-4283-9659)
- Jessica Panman (ORCID: https://orcid.org/0000-0002-1126-6555)
- Tjitske Kleefstra (ORCID: https://orcid.org/0000-0002-0956-0237)
- Charlotte H Graafland (ORCID: https://orcid.org/0009-0000-2178-0032)
Institutions
- Radboud University Nijmegen (NL)
- Erasmus MC (NL)
- Radboud University Medical Center (NL)
- Vincent Van Gogh Voor Geestelijke Gezondheidszorg (NL)
- Amsterdam University Medical Centers (NL)
- University of Amsterdam (NL)
- Erasmus University Rotterdam (NL)
Publication Details
- Journal
- Alzheimer s Research & Therapy
- Published
- 2025-05-06
- DOI
- https://doi.org/10.1186/s13195-025-01749-z
- Citations
- 3
- Primary Topic
- Amyotrophic Lateral Sclerosis Research
- Type
- article
- Field-Weighted Citation Impact
- 4.17
Funders
- ZonMw