ELSI Friday Forum: “Knowing or Not Knowing: The Ethics of Returning Genetic Risk Information for Alzheimer’s Disease”

Abstract: The return of genetic and biomarker information in Alzheimer’s disease (AD) research has emerged as a pressing ethical question as disease-modifying treatments become available and expectations around disclosure shift. This ELSI Friday Forum brings together two leading ELSI researchers whose work interrogates these tensions.

Jessica Mozersky, PhD (Washington University in St. Louis) will draw on findings from her recent cohort study evaluating who declines to learn AD biomarker results and will discuss the ethical significance of respecting the “right not to know.” Ruth Ottman, PhD (Columbia University) will present findings from her longitudinal community-based study of Latinos in northern Manhattan that examines the psychosocial, behavioral, and cognitive impacts of learning late-onset Alzheimer’s disease risk based on APOE genotype disclosure versus nondisclosure. Moderated by Emily Largent, JD, PhD, RN (University of Pennsylvania), this session will explore the ethical, cultural, and policy implications of returning AD genetic risk information.