Psychological impacts of APOE genotype disclosure among Latinos in New York City: a randomized controlled trial
In brief
Alzheimer's risk-gene disclosure did not worsen mental health in Latino trial
Among 374 Latino adults in New York City, receiving Alzheimer's risk estimates that included apolipoprotein E (APOE) genotype did not increase psychological distress, depression, anxiety, or perceived disease threat compared with estimates that left genotype out. The groups also reported similar numbers of adverse events over 15 months, but the findings may not extend beyond this study population.
- Journal
- Alzheimer's & dementia : the journal of the Alzheimer's Association (Q1)
- Published
- 1 September 2026
- Study design
- Randomized controlled trial
- Evidence level
- Level 1, High (CEBM 1b)
- Authors
- Ruth Ottman, John B Wetmore, Cheng-Shiun Leu, Wendy R Uhlmann, Jill Goldman, Sophia Rodriguez, et al.
- PMID
- 42712082
- DOI
- 10.1002/alz.71796
Why clinicians should know about it
- Picked for Genetics (clinical) (top studies of the week, 25 October 2026): RCT, APOE disclosure has no adverse psychological impact
Abstract
INTRODUCTION: Latinos face increased Alzheimer's disease (AD) risk but are underrepresented in studies of APOE genotype disclosure. We evaluated the psychological impacts of APOE disclosure in the Información de la Enfermedad de Alzheimer para Latinos (IDEAL) study, a randomized controlled trial among Latinos in New York City. METHODS: Latino northern Manhattan residents without self-reported AD (mean age 52, 69% women, 49% college graduates) were randomized in the period August 2021 to July 2024 to receive AD risk estimates to age 85 incorporating APOE genotype, family history, and ethnicity (disclosure) or the same factors excluding APOE (non-disclosure). Bilingual genetic counselors delivered risk estimates to both groups, unmasked to randomization. Follow-up surveys were completed 6 weeks, 9 months, and 15 months after risk delivery. Primary outcomes were impact of genetic testing in AD (IGT-AD) and Impact of Event Scale-Revised (IES-R). Secondary outcomes were changes from baseline in depression, anxiety, and perceived AD threat. Analyses used intention-to-treat with multiple imputation. RESULTS: Disclosure (N = 194) and non-disclosure (N = 180) groups did not differ on IGT-AD (mean disclosure-non-disclosure difference [MD] at 6 weeks: -1.5, p = 0.14; 9 months: -1.2, p = 0.35; 15 months: -2.0, p = 0.07), IES-R (MD at 6 weeks: 0.00, p = 0.98; 9 months: 0.01, p = 0.84; 15 months: 0.03, p = 0.64), or change in secondary outcomes. Occurrence of disclosure-related adverse events was similar in the disclosure (N = 2) and non-disclosure (N = 3) groups. DISCUSSION: In this Latino cohort, APOE disclosure did not have clinically significant adverse psychological effects, addressing an important evidence gap. TRIAL REGISTRATION: ClinicalTrials.gov NCT04471779.
Abstract as published, via PubMed.
For healthcare professionals. The summary is generated by AI from the published abstract, and the evidence level is assigned automatically from the study design on the Oxford CEBM hierarchy. Neither is medical advice. Read the full paper before changing practice.