An important goal of Parkinson’s disease research is to diagnose the disease at an earlier stage, even before the typical motor symptoms appear, in the so-called ‘prodromal phase’. Currently, there are no treatments available that can slow down or prevent disease progression in this early phase, even though many of the early symptoms are treatable. This raises ethical questions about whether people want to know their future risk of Parkinson’s and, if so, how this information should be given. This article summarizes the current state of knowledge, but also open questions about risk disclosure in the prodromal phase of Parkinson’s. Previous studies have shown that many people with early symptoms of Parkinson’s would like to know their risk, but that the individual’s wish to know (or not to know) must first be ascertained and respected. Future studies need to find out whether very early diagnosis of Parkinson’s might have an impact on people affected, for example in terms of psychological stress or anxiety, and whether cultural background might influence attitudes to risk disclosure. Furthermore, it is expected that in the future it will be possible to make an early diagnosis of Parkinson’s using specific new techniques, e.g., by testing spinal fluid. It is of utmost importance to find out if and how test results of these new techniques should be communicated to patients, even if they do not lead to direct medical treatment.
帕金森病研究的一个重要目标是在早期诊断疾病,甚至在典型的运动症状出现之前,在所谓的“前驱阶段”。目前,在这个早期阶段,没有可用的治疗方法可以减缓或预防疾病的进展,尽管许多早期症状是可以治疗的。这引发了道德问题,即人们是否想知道他们未来患帕金森病的风险,如果是,如何提供这些信息。本文总结了当前的知识状态,但也公开了有关帕金森病前驱阶段风险披露的问题。以前的研究表明,许多有帕金森病早期症状的人都想知道他们的风险,但是,必须首先确定和尊重个人想要知道(或不知道)的愿望。未来的研究需要找出帕金森病的早期诊断是否会对患者产生影响。例如在心理压力或焦虑方面,以及文化背景是否会影响对风险披露的态度。此外,预计未来将有可能使用特定的新技术对帕金森病进行早期诊断,例如,通过测试脊髓液。最重要的是找出这些新技术的测试结果是否以及如何传达给患者,即使它们不会导致直接的医疗。