Impact of sharing Alzheimer's disease biomarkers with individuals without dementia: A systematic review and meta‐analysis of empirical data
Open Access
- 26 July 2023
- journal article
- research article
- Published by Wiley in Alzheimer's & Dementia
- Vol. 19 (12) , 5773-5794
Abstract
Introduction: We conducted a systematic literature review and meta‐analysis of empirical evidence on expected and experienced implications of sharing Alzheimer's disease (AD) biomarker results with individuals without dementia.Methods: PubMed, Embase, APA PsycInfo, and Web of Science Core Collection were searched according to Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Results from included studies were synthesized, and quantitative data on psychosocial impact were meta‐analyzed using a random‐effects model.Results: We included 35 publications. Most personal stakeholders expressed interest in biomarker assessment. Learning negative biomarker results led to relief and sometimes frustration, while positive biomarkers induced anxiety but also clarity. Meta‐analysis of five studies including 2012 participants (elevated amyloid = 1324 [66%], asymptomatic = 1855 [92%]) showed short‐term psychological impact was not significant (random‐effect estimate = 0.10, standard error = 0.23, P = 0.65). Most professional stakeholders valued biomarker testing, although attitudes and practices varied considerably.Discussion: Interest in AD biomarker testing was high and sharing their results did not cause psychological harm.Highlights: Most personal stakeholders expressed interest in Alzheimer's disease biomarker assessment. Personal motivations included gaining insight, improving lifestyle, or preparing for the future. There was no short‐term psychological impact of sharing biomarker status, implying it can be safe. Most professional stakeholders valued biomarker testing, believing the benefits outweigh the risk. Harmonized guidelines on biomarker testing and sharing results are required.Keywords
This publication has 80 references indexed in Scilit:
- Using AD biomarker research results for clinical careNeurology, 2013
- Would you want to know? Public attitudes on early diagnostic testing for Alzheimer's diseaseAlzheimer's Research & Therapy, 2013
- Applying the IWG Research Criteria in Clinical PracticeMedical Clinics of North America, 2013
- Amyloid imaging in cognitively normal individuals, at-risk populations and preclinical Alzheimer's diseaseNeuroImage: Clinical, 2013
- Clinical and Biomarker Changes in Dominantly Inherited Alzheimer's DiseaseNew England Journal of Medicine, 2012
- Addressing the ethical, policy, and social challenges of preclinical Alzheimer diseaseNeurology, 2011
- Willingness‐to‐pay for predictive tests with no immediate treatment implications: a survey of US residentsHealth Economics, 2010
- Interdisciplinarity, Applied Ethics and Social Science2009
- Health Behavior Changes After Genetic Risk Assessment for Alzheimer Disease: The REVEAL StudyAlzheimer Disease & Associated Disorders, 2008
- Genetic Testing For Alzheimer’s Disease And Its Impact On Insurance Purchasing BehaviorHealth Affairs, 2005