Genetic and biomarker disclosure process in a memory and aging study.

Abstract

Despite growing awareness that disclosing biomarker results to research participants is aligned with ethical principles of researcher-participant partnership, there are currently no widely adopted guidelines for this disclosure in Alzheimer's disease research. We developed a process and tools to deliver biomarker and genetic results to 65 participants of The Memory and Aging Study of the Duke-UNC Alzheimer's Disease Research Center (ADRC). Survey responses of 46 participants were analyzed. We show high participant satisfaction and lower anxiety levels after receiving the results. The developed process and materials provide a template for standardized Alzheimer's disease biomarker result delivery in the research setting.