Ethical considerations of disclosure of iatrogenic cerebral amyloid angiopathy

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).