Interest in apolipoprotein E ( APOE ) disclosure among at-risk, cognitively unimpaired, community-dwelling Australian adults

Background Apolipoprotein E ( APOE ) ɛ4 carriage is the strongest genetic risk factor for sporadic Alzheimer's disease dementia. Clinical guidelines discourage APOE disclosure, but therapeutic advances are changing this. Limited work has assessed knowledge and interest in APOE disclosure in Australian adults, and it remains unclear which characteristics are associated with interest within this sample. Objective This study examines knowledge and interest in APOE disclosure among Australian adults. Based on previous estimates, it was hypothesized that ≥50% would be interested in APOE disclosure. Methods Cognitively unimpaired middle- and older-aged adults (N = 1421) completed the Knowledge, Interest and Preferences for APOE Testing and Disclosure survey, measuring APOE knowledge, interest in APOE disclosure, and perceived benefits/concerns. Participants completed online assessments measuring demographic, mood, subjective cognitive, Alzheimer's disease literacy, and perceived risk characteristics. Participants were categorized into four groups based on their interest: 1) want to know, 2) interested but need more information to decide, 3) unsure, 4) do not want to know). Results Almost half of participants (44.2%) indicated that they had heard of APOE previously. Most participants (82%) were interested in knowing their APOE genotype or wanting more information. Compared to individuals who did not want to know their APOE genotype (114, 7.9%), individuals who wanted to know were younger, female, more likely to report dementia family history, and had greater perceived cognitive and Alzheimer's disease risk. Conclusions Interest in APOE disclosure is high among Australian adults, consistent with international estimates. Findings will inform APOE disclosure protocols for Australian adults at-risk of dementia.