Erickson Claire M, Chin Nathaniel A, Johnson Sterling C, Gleason Carey E, Clark Lindsay R
Neuroscience & Public Policy Program University of Wisconsin-Madison School of Medicine and Public Health Madison Wisconsin USA.
Alzheimer's Disease Research Center University of Wisconsin School of Medicine and Public Health Madison Wisconsin USA.
Alzheimers Dement (Amst). 2021 Feb 20;13(1):e12150. doi: 10.1002/dad2.12150. eCollection 2021.
Disclosure of personal disease-related information to asymptomatic adults has been debated over the last century in medicine and research. Recently, Alzheimer's disease (AD) has been conceptualized as a continuum that begins with a "preclinical" stage in which biomarkers are present in the absence of cognitive impairment. Studies have begun assessing the safety, psychological, and behavioral effects of disclosing both AD-related genetic and biomarker information to cognitively unimpaired older adults. Yet, debate continues over the appropriate circumstances and methods for returning such information. This article outlines concerns with and rationale for AD biomarker disclosure and summarizes findings from prior studies. Overall, this article aims to describe and respond to key questions concerning disclosure of amyloid positron emission tomography scan results to asymptomatic adults in a research setting. Moving forward, such conditions are important to consider as interventions target the preclinical phase of AD and normalize disclosing biomarker information to cognitively unimpaired persons.
在过去的一个世纪里,医学和研究领域一直在讨论是否应向无症状成年人披露个人疾病相关信息。最近,阿尔茨海默病(AD)被概念化为一个连续体,始于“临床前”阶段,即在没有认知障碍的情况下存在生物标志物。研究已经开始评估向认知未受损的老年人披露与AD相关的基因和生物标志物信息的安全性、心理和行为影响。然而,对于返回此类信息的适当情况和方法的争论仍在继续。本文概述了对AD生物标志物披露的担忧及理由,并总结了先前研究的结果。总体而言,本文旨在描述并回应在研究环境中向无症状成年人披露淀粉样蛋白正电子发射断层扫描结果的关键问题。展望未来,随着干预措施针对AD的临床前阶段,并将向认知未受损者披露生物标志物信息常态化,这些情况很重要,需要加以考虑。