Disclosing genetic risk for Alzheimer's dementia to individuals with mild cognitive impairment
Kurt D. Christensen, Department of Population Medicine Harvard Pilgrim Health Care Institute and Harvard Medical School Boston Massachusetts USA.
Jason Karlawish, Department of Medicine Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA.
J Scott Roberts, Department of Health Behavior and Health Education University of Michigan School of Public Health Ann Arbor Michigan USA.
Wendy R. Uhlmann, Departments of Internal Medicine and Human Genetics University of Michigan Ann Arbor Michigan USA.
Kristin Harkins, Department of Medicine Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA.
Elisabeth M. Wood, Department of Medicine Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA.
Thomas O. Obisesan, Department of Medicine Howard University College of Medicine Washington, DC USA.
Lan Q. Le, Department of Health Behavior and Health Education University of Michigan School of Public Health Ann Arbor Michigan USA.
L Adrienne Cupples, Departments of Biostatistics and Epidemiology Boston University School of Public Health Boston Massachusetts USA.
Emilie S. Zoltick, Division of Genetics, Department of Medicine Brigham and Women's Hospital Boston Massachusetts USA.
Megan S. Johnson, Department of Medicine Howard University College of Medicine Washington, DC USA.
Margaret K. Bradbury, Department of Research Hemophilia Federation of America Washington DC USA.
Leo B. Waterston, Center for Outcomes Research & Evaluation (CORE) Maine Medical Center Research Institute Portland Maine USA.
Clara A. Chen, Biostatistics and Epidemiology Data Analytics Center Boston University School of Public Health Boston Massachusetts USA.
Sara Feldman, Department of Health Behavior and Health Education University of Michigan School of Public Health Ann Arbor Michigan USA.
Denise L. Perry, Division of Genetics, Department of Medicine Brigham and Women's Hospital Boston Massachusetts USA.
Robert C. Green, Broad Institute of Harvard and MIT Cambridge Massachusetts USA.
Abstract
INTRODUCTION: The safety of predicting conversion from mild cognitive impairment (MCI) to Alzheimer's disease (AD) dementia using apolipoprotein E () genotyping is unknown. METHODS: We randomized 114 individuals with MCI to receive estimates of 3-year risk of conversion to AD dementia informed by genotyping (disclosure arm) or not (non-disclosure arm) in a non-inferiority clinical trial. Primary outcomes were anxiety and depression scores. Secondary outcomes included other psychological measures. RESULTS: Upper confidence limits for randomization arm differences were 2.3 on the State Trait Anxiety Index and 0.5 on the Geriatric Depression Scale, below non-inferiority margins of 3.3 and 1.0. Moreover, mean scores were lower in the disclosure arm than non-disclosure arm for test-related positive impact (difference: -1.9, indicating more positive feelings) and AD concern (difference: -0.3). DISCUSSION: Providing genetic information to individuals with MCI about imminent risk for AD does not increase risks of anxiety or depression and may provide psychological benefits.
