Kaushik Kanishk, Eijkholt Marleen M, de Graeff Nienke, Banerjee Gargi, Werring David J, Terwindt Gisela M, van Etten Ellis S, Wermer Marieke J H
Department of Neurology, Leiden University Medical Centre (LUMC), Leiden, the Netherlands.
Department of Medical Ethics and Health Law, LUMC, Leiden, the Netherlands.
Alzheimers Dement. 2025 Jul;21(7):e70431. doi: 10.1002/alz.70431.
Cerebral amyloid angiopathy (CAA) causes stroke and cognitive decline. The recently identified iatrogenic CAA subtype (iCAA) is thought to be transmitted through medical procedures involving cadaveric human material and potentially neurosurgical instruments or blood transfusions. This raises ethical questions concerning disclosure of iCAA. We consider ethical arguments concerning three disclosure-related questions. Should clinicians disclose their suspicion of iCAA to patients presenting with CAA and a history of relevant exposure? Should clinicians recommend the additional tests needed for iCAA diagnosis? Should clinicians proactively identify and notify asymptomatic at-risk individuals who are unaware of their risk? We conclude that disclosure of the iCAA-diagnosis and communication of diagnostic uncertainties are warranted, based on professional responsibility to facilitate autonomous decision-making, despite limited clinical benefits. While certain diagnoses are impossible, recommending additional diagnostics can provide diagnostic support and exclude other causes. Notification of known exposure-confirmed, asymptomatic, at-risk individuals seems warranted; however, proactive identification remains challenging. HIGHLIGHTS: iCAA may result from Aß transmission via medical treatments. We discuss three clinically relevant disclosure-related ethical questions that arise due to the uncertainty surrounding the discovery of iCAA. We focus on disclosing to patients with suspected iCAA the recommendation of additional diagnostics and proactive identification and notification of asymptomatic persons at risk. This analysis supports clinicians in their decision to disclose a presumed iCAA diagnosis and when informing patients about additional CAA diagnostics. Our findings serve as a reference tool for handling disclosure of future discoveries of presumed iatrogenesis (e.g., that of iatrogenic Alzheimer's disease).
脑淀粉样血管病（CAA）可导致中风和认知功能下降。最近发现的医源性CAA亚型（iCAA）被认为是通过涉及人体尸体材料以及潜在的神经外科器械或输血的医疗程序传播的。这引发了有关iCAA披露的伦理问题。我们考虑了与披露相关的三个问题的伦理观点。临床医生是否应向患有CAA且有相关接触史的患者披露其对iCAA的怀疑？临床医生是否应推荐iCAA诊断所需的额外检查？临床医生是否应主动识别并通知那些未意识到自身风险的无症状高危个体？我们得出结论，基于促进自主决策的职业责任，尽管临床益处有限，但仍有必要披露iCAA诊断并告知诊断的不确定性。虽然某些诊断无法做出，但推荐额外的诊断检查可以提供诊断支持并排除其他病因。通知已知有接触史、无症状的高危个体似乎是合理的；然而，主动识别仍然具有挑战性。要点：iCAA可能是由于通过医疗治疗传播β淀粉样蛋白所致。我们讨论了由于iCAA发现的不确定性而产生的三个与临床相关的披露相关伦理问题。我们重点关注向疑似iCAA患者披露、推荐额外诊断检查以及主动识别和通知无症状高危人群。该分析支持临床医生决定披露假定的iCAA诊断以及何时告知患者有关CAA的额外诊断检查。我们的研究结果可作为处理未来假定医源性疾病（如医源性阿尔茨海默病）发现披露的参考工具。
