Perry Julia, Radenbach Katrin, Geschke Katharina, Rostamzadeh Ayda
Department of Medical Ethics and History of Medicine, University Medical Center Goettingen, Goettingen, Germany.
Department of Geriatric Psychiatry, Ökumenisches Hainich Klinikum gGmbH, Mühlhausen, Germany.
Alzheimers Dement. 2024 Dec;20(12):8910-8936. doi: 10.1002/alz.14365. Epub 2024 Nov 19.
New possibilities of biomarker-based predictive technologies for Alzheimer's disease (AD) have become more reliable as well as more accessible. Standardized clinical recommendations and guidance for counseling and disclosure in this context are not yet well developed. Our scoping review identified publications from database searches in PubMed, PsycINFO, LIVIVO, and Web of Science. Inclusion criteria were: (1) information or counseling, (2) biomarkers and a type of cognitive impairment or AD, and (3) published between 2005 and 2024. We identified 63 articles and synthesized them along the categories of staged information provision: pre-test counseling, disclosure, and post-disclosure follow-up. Most publications referred to the context of disclosure (48), followed by pre-test counseling (33), and post-disclosure follow-up (31). Some publications referred to all stages of counseling (17). Our findings highlight the need to further develop and specify comprehensive and standardized guidelines for counseling, disclosure, and post-disclosure follow-up in the context of AD biomarker testing. HIGHLIGHTS: New possibilities of biomarker-based predictive technologies for Alzheimer's disease (AD) have become more reliable and also more accessible. However, clinical recommendations and guidance for counseling and disclosure in the context of AD biomarker testing are currently not well developed. We carried out a scoping review with the aim to generate an overview of the scientific literature and guidance available regarding counseling, biomarker test result and dementia risk disclosure, and clinical management prior to and in the course of a biomarker-based diagnosis in early stages of AD. We identified 63 relevant articles. Most publications referred to the context of disclosure (48), followed by pre-test counseling (33), and post-disclosure follow-up (31). Some publications referred to all stages of counseling (17). Our findings highlight the urgent need for national and international consensus guidelines for comprehensive and staged counseling and disclosure practices. While most publications identify relevant ethical challenges posed for counseling practices in the context of AD biomarker testing, they rarely present any practical recommendations for clinicians, on how and what to counsel on a concrete level.
基于生物标志物的阿尔茨海默病（AD）预测技术的新可能性变得更加可靠且更易于获得。在这种情况下，关于咨询和信息披露的标准化临床建议及指导尚未得到充分发展。我们的范围综述通过在PubMed、PsycINFO、LIVIVO和科学网中进行数据库检索来确定相关出版物。纳入标准为：（1）信息或咨询，（2）生物标志物以及一种认知障碍类型或AD，（3）2005年至2024年期间发表。我们确定了63篇文章，并按照分阶段信息提供的类别进行了综合：检测前咨询、信息披露和披露后随访。大多数出版物涉及信息披露的背景（48篇），其次是检测前咨询（33篇）和披露后随访（31篇）。一些出版物涉及咨询的所有阶段（17篇）。我们的研究结果强调了在AD生物标志物检测背景下，需要进一步制定和明确关于咨询、信息披露及披露后随访的全面且标准化指南。要点：基于生物标志物的阿尔茨海默病（AD）预测技术的新可能性变得更加可靠且更易于获得。然而，AD生物标志物检测背景下的咨询和信息披露的临床建议及指导目前尚未得到充分发展。我们进行了一项范围综述，旨在概述关于咨询、生物标志物检测结果和痴呆风险披露以及AD早期基于生物标志物诊断之前及过程中的临床管理的现有科学文献和指导。我们确定了63篇相关文章。大多数出版物涉及信息披露的背景（48篇），其次是检测前咨询（33篇）和披露后随访（31篇）。一些出版物涉及咨询的所有阶段（17篇）。我们的研究结果凸显了制定国家和国际共识指南以进行全面且分阶段的咨询和信息披露实践的迫切需求。虽然大多数出版物确定了AD生物标志物检测背景下咨询实践所面临的相关伦理挑战，但它们很少就临床医生在具体层面上如何咨询以及咨询什么提出任何实际建议。
