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

Ethical Aspects of Prodromal Synucleinopathy Prognostic Counseling

Ambra Stefani    *
1   Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria
2   Neurological Clinical Research Institute, Massachusetts General Hospital, Harvard University, Boston, Massachusetts
,
Jessica Mozersky
3   Division of General Medical Sciences, Washington University in Saint Louis, Saint Louis, Missouri
,
Vikas Kotagal
4   Department of Neurology, University of Michigan-Ann Arbor, Ann Arbor, Michigan
,
Birgit Högl
1   Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria
,
Francesca Ingravallo
5   Department of Medical and Surgical Sciences, University of Bologna, Bologna, Emilia-Romagna, Italy
,
Yo-El S. Ju
3   Division of General Medical Sciences, Washington University in Saint Louis, Saint Louis, Missouri
,
Alon Avidan
6   Department of Neurology, University of California-Los Angeles, Los Angeles, California
,
Richard Sharp
7   Department of Quantitative Health Sciences, Mayo Clinic College of Medicine and Science, Rochester, Minnesota
,
Aleksandar Videnovic
2   Neurological Clinical Research Institute, Massachusetts General Hospital, Harvard University, Boston, Massachusetts
,
Carlos H. Schenck
8   Department of Psychiatry, University of Minnesota, Minneapolis, Minnesota
,
Erik K. St Louis    *
7   Department of Quantitative Health Sciences, Mayo Clinic College of Medicine and Science, Rochester, Minnesota
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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

* Co-Primary Principal Authors




Publication History

Accepted Manuscript online:
24 January 2023

Article published online:
07 March 2023

© 2023. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 

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