A Survey of Knowledge and Views Concerning Genetic and Amyloid PET Status Disclosure.

ABSTRACT:

Introduction

This survey characterizes viewpoints of cognitively intact at-risk participants in an Alzheimer prevention registry if given the opportunity to learn their genetic and amyloid PET status.

Methods

207 participants were offered a 25-item survey. They were asked if they wished to know their ApoE and amyloid PET status, and if so, reasons for wanting to know, or not, and the effects of such information on life plans.

Results

164 (79.2%) of registrants completed the survey. Among those who were unaware of their ApoE or amyloid PET results, 80% desired to know this information. The most common reasons for wanting disclosure were to participate in research, to arrange personal affairs, to prepare family for illness, and to move life plans closer into the future.

SUBMITTER: Ott BR 

PROVIDER: S-EPMC4804344 | biostudies-literature | 2016 Jan

REPOSITORIES: biostudies-literature