Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda.

ABSTRACT: Currently, a prognostic biomarker-based model is being developed to predict the onset and disease progression of Huntington's Disease (HD) and Spinocerebellar Ataxia (SCA) types 1 and 3, both late-onset genetic neurodegenerative diseases lacking a disease-modifying treatment (DMT). The need for more accurate predictions of onset and disease progression arises in the context of clinical trials evaluating the effectiveness of potential DMTs and identifying the optimal time to initiate such a DMT. Moreover, such a prognostic model may provide mutation carriers with personal utility. The aim of this article is to anticipate the ethical issues raised by these new prognostic models and to formulate the ethical issues that need to be addressed to facilitate an ethically responsible development an

SUBMITTER: Rensink M 

PROVIDER: S-EPMC11576964 | biostudies-literature | 2024 Nov

REPOSITORIES: biostudies-literature