A survey of knowledge and views concerning genetic and amyloid positron emission tomography status disclosure

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 positron emission tomography (PET) status. METHODS: A total of 207 participants were offered a 25-item survey. They were asked if they wished to know their apolipoprotein E (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: One hundred sixty-four (79.2%) of the 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, arrange personal affairs, prepare family for illness, and move life plans closer into the future. When asked if disclosure would help with making plans to end one's life when starting to lose their memory, 12.7% versus 11.5% responded yes for APOE and amyloid PET disclosures, respectively. Disclosure of these test results, if required for participation in a clinical trial, would make 15% of the people less likely to participate. Likelihood of participation in prevention research and the desire to know test results were not related to scores on brief tests of knowledge about the tests. DISCUSSION: These results suggest that stakeholders in AD prevention research generally wish to know biological test information about their risk for developing AD to assist in making life plans.