Ethical Aspects of Prodromal Synucleinopathy Prognostic Counseling

Ambra Stefani, Jessica Mozersky, Vikas Kotagal, Birgit Högl, Francesca Ingravallo, Yo El S. Ju, Alon Avidan, Richard Sharp, Aleksandar Videnovic, Carlos H. Schenck, Erik K. St Louis

Research output: Contribution to journalReview articlepeer-review

3 Scopus citations

Abstract

Alpha-synucleinopathies can be identified in their prodromal phase, raising several ethical issues. In this review, we first provide definitions of prodromal α-synucleinopathies and discuss the importance of distinguishing between prodromes and risk factors. Next, we discuss the implications of a diagnosis of prodromal α-synucleinopathy and considerations regarding prognostic counseling in both clinical and research settings. We review available data on patient preferences regarding disclosure as well as providers' perspectives. We examine the pros and cons of disclosing a diagnosis of prodromal α-synucleinopathy, taking into consideration the differences between clinical and research settings. Asking about willingness to know in clinical and research settings and the shared decision-making process applied to prognostic counseling is discussed. Concerning research settings, ethical aspects regarding clinical trials are addressed. Availability of direct-to-consumer technologies will likely lead to novel contexts requiring prognostic counseling, and future neuroprotective or neuromodulating treatments may require further considerations on the timing, role, and importance of prognostic counseling. Recommendations on how to address ethical gaps should be a priority for patients, medical professional societies, and research workgroups. Ethical issues must be considered as an integral part of the overall clinical and research approach to prodromal synucleinopathies.

Original languageEnglish
Pages (from-to)166-177
Number of pages12
JournalSeminars in Neurology
Volume43
Issue number1
DOIs
StatePublished - Jan 24 2023

Keywords

  • RBD
  • REM sleep behavior disorder neurodegeneration
  • alpha-synuclein
  • ethics

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