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

doi:10.1055/a-2019-0245

Seminars in Neurology, Table of Contents

Semin Neurol 2023; 43(01): 166-177
DOI: 10.1055/a-2019-0245

Review Article

Ethical Aspects of Prodromal Synucleinopathy Prognostic Counseling

Authors

Ambra Stefani ^*

¹Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria

²Neurological Clinical Research Institute, Massachusetts General Hospital, Harvard University, Boston, Massachusetts
Jessica Mozersky

³Division of General Medical Sciences, Washington University in Saint Louis, Saint Louis, Missouri
Vikas Kotagal

⁴Department of Neurology, University of Michigan-Ann Arbor, Ann Arbor, Michigan
Birgit Högl

¹Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria
Francesca Ingravallo

⁵Department of Medical and Surgical Sciences, University of Bologna, Bologna, Emilia-Romagna, Italy
Yo-El S. Ju

³Division of General Medical Sciences, Washington University in Saint Louis, Saint Louis, Missouri
Alon Avidan

⁶Department of Neurology, University of California-Los Angeles, Los Angeles, California
Richard Sharp

⁷Department of Quantitative Health Sciences, Mayo Clinic College of Medicine and Science, Rochester, Minnesota
Aleksandar Videnovic

²Neurological Clinical Research Institute, Massachusetts General Hospital, Harvard University, Boston, Massachusetts
Carlos H. Schenck

⁸Department of Psychiatry, University of Minnesota, Minneapolis, Minnesota
Erik K. St Louis ^*

⁷Department of Quantitative Health Sciences, Mayo Clinic College of Medicine and Science, Rochester, Minnesota

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.

Keywords

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

Full Text

References

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