Ethical Aspects of Prodromal Synucleinopathy Prognostic Counseling

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.

Low Specificity of Rapid Eye Movement Sleep Behavior Disorder Questionnaires: Need for Better Screening Methods

“…Based on these and previous results, 10,14-16,20,21,26,27 questionnaires and single question should not be used to diagnose RBD or to select patients with "probable RBD" to be included in future neuroprotective clinical trials. Due to the consequences of a false-positive RBD diagnosis based on screening questionnaires, not only for inclusion in research studies and clinical trials but also considering counseling and the important ethical implications of a diagnosis of iRBD 28 (ie, prodromal synucleinopathy), in line with the suggestion by Yao et al, 29 we believe that the term "probable RBD" should not be used to describe subjects screening positive for questionnaires. We found some differences in performance among the investigated RBD screening questionnaires.…”

Disclosing the Risk Associated with Isolated REM Behavior Disorder: The Sleep Experts’ Perspective

“…This approach is in line with a relational account of patient autonomy and with the model of shared decision making that has recently been proposed for iRBD prognostic counseling. 23 On the other hand, the "danger that misunderstandings and misappropriations of ideas derived from relational accounts could encourage the kinds of inappropriate paternalism" 46 exists. Therefore, studies investigating the patient and family perspectives are needed to understand whether this approach satisfies their needs and preferences, aspects that should be considered when developing educational programs and recommendations on risk disclosure.…”

“…An ethical tension between the principles of respecting patient autonomy and nonmaleficence (avoiding harm) has often been emphasized, although some scholars have also underlined the role of the principle of beneficence. [11][12][13][14][15][16][17][18][19][20][21][22][23] Balancing these ethical principles, and with the objective of preserving the patient-physician relationship, there is an agreement that the patient should at least be informed of the association between iRBD and NDDs, and that the patient's preferences regarding further information should be investigated. 13,15,16,18,[20][21][22][23][24][25] Recent surveys found that most patients with iRBD want to receive information concerning their risk of developing an NDD.…”

“…[11][12][13][14][15][16][17][18][19][20][21][22][23] Balancing these ethical principles, and with the objective of preserving the patient-physician relationship, there is an agreement that the patient should at least be informed of the association between iRBD and NDDs, and that the patient's preferences regarding further information should be investigated. 13,15,16,18,[20][21][22][23][24][25] Recent surveys found that most patients with iRBD want to receive information concerning their risk of developing an NDD. 25,26 However, a third of patients did not recall having received this information at the time of diagnosis.…”

REM sleep behavior disorder: update on diagnosis and management

“…Since it is now well-established by multiple studies published in the medical literature that up to 90% of patients ≥ 50 years old with iRBD will eventually develop an alpha-synucleinopathy, the important issues of prognostic counseling and ethical implications must be considered. A comprehensive review by experts on this topic (including one of the authors, CHS) has recently been published, 69 and will now be summarized. The most common ethical model for the physician-patient relationship is “shared decision-making”.…”