Alexandra Sweitzer
Pronouns: she/her
Research Mentor(s): Mary Lesniak
Research Mentor School/College/Department: Psychiatry – Neuropsychology Division / Medicine
Program: UROP
Session: Session 6 (3:40pm – 4:30pm)
Authors: Alexandra Sweitzer, Mary Lesniak, Annalise Rahman-Filipiak
Abstract
Minimal research has been done surrounding disclosure of Alzheimer’s Disease (AD) biomarker results and whether individuals want to know their risk for the disease. We hypothesize that participants will want to receive this disclosure information due to the potential benefits it brings, but there may also be some hesitation toward wanting their results, as it also comes with risks. The first part of the SHARE(D) Project (Sharing Alzheimer’s Risk Estimates with Diverse Populations) used a mixed methods approach to investigate how cognitively healthy older adults (n = 34) and individuals with Mild Cognitive Impairment (MCI; n = 23) weigh the risks and benefits of receiving their AD biomarker results via amyloid and tau positron emission tomography. Participants completed a semi-structured interview about their perspectives about learning their AD risk; they were provided prompts about the risks, such as specific fears, and benefits, such as specific action, of biomarker disclosure. These data were analyzed qualitatively with two independent coders (kappa = 0.98). Both groups mentioned taking a specific action as a ‘benefit’, with the most common benefit being sharing this information with family members. More participants with MCI than HOA mentioned a specific fear; however, an equal proportion of both groups cited a concern about burdening loved ones. This research looks at whether individuals want their biomarker risk disclosure and why or why not. Once we know if these diverse populations want their disclosure information and why, we can alter the way we disclose individual results to participants, in hopes that they may be more likely to take adaptive action to reduce their risk for further decline, to prepare for the future, or to lower their disease-related distress.
