Diagnosis Threat Related to Disclosure of Alzheimer Disease Biomarkers and a Discussion of the Ethics in Clinical and Research Settings

Abstract

Diagnosis threat occurs when individuals have a negative expectation of behaviors or symptoms associated with a proposed diagnosis. For example, a member of a group may change their behavior or cognitive functioning because they are aware that such changes are typically expected of individuals in that group. In dementia, people may experience diagnosis threat because they have a reasonable expectation of how behavior or cognitive functioning changes in these conditions. Studies on diagnosis threat have demonstrated that by simply knowing of an increased risk of dementia, people will display declines in cognitive function and will self-report more memory concerns. However, studies demonstrate that not all individuals with a risk of dementia will develop the clinical manifestation of the disease. With increased medical advances in genetics and neuroimaging, people have increasing access to knowledge about their genetic risks and vulnerabilities, and doctors sometimes reveal these vulnerabilities to asymptomatic patients. This chapter reviews the important aspects of diagnosis threat correlated with revealing the risk of dementia in an asymptomatic population and how disclosures in this population might cause diagnosis threat and impact psychological well-being. Additional discussion includes clinical and research practice standards for the appropriate and ethical use of genetic and neuroimaging data associated with dementia risk.