Stefani Ambra, Mozersky Jessica, Kotagal Vikas, Högl Birgit, Ingravallo Francesca, Ju Yo-El S, Avidan Alon, Sharp Richard, Videnovic Aleksandar, Schenck Carlos H, St Louis Erik K
Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria.
Neurological Clinical Research Institute, Massachusetts General Hospital, Harvard University, Boston, Massachusetts.
Semin Neurol. 2023 Feb;43(1):166-177. doi: 10.1055/a-2019-0245. Epub 2023 Jan 24.
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.
α-突触核蛋白病在其前驱期即可被识别，这引发了若干伦理问题。在本综述中，我们首先给出前驱性α-突触核蛋白病的定义，并讨论区分前驱症状和危险因素的重要性。接下来，我们讨论前驱性α-突触核蛋白病诊断的意义，以及在临床和研究环境中进行预后咨询的注意事项。我们回顾了关于患者对信息披露偏好的现有数据以及提供者的观点。我们考虑到临床和研究环境的差异，审视了披露前驱性α-突触核蛋白病诊断的利弊。讨论了在临床和研究环境中询问患者了解诊断结果的意愿以及应用于预后咨询的共同决策过程。关于研究环境，还讨论了临床试验的伦理问题。直接面向消费者的技术的出现可能会导致需要进行预后咨询的新情况，未来的神经保护或神经调节治疗可能需要对预后咨询的时机、作用和重要性进行进一步考虑。关于如何弥补伦理差距的建议应成为患者、医学专业协会和研究工作组的优先事项。伦理问题必须被视为前驱性突触核蛋白病整体临床和研究方法的一个组成部分。
