Alzheimer's gene results sound scary. In this trial, distress didn't rise.

Randomised controlled trial (RCT). 374 people. randomized Aug 2021 - Jul 2024; follow-up surveys 6 weeks, 9 months and 15 months after the risk session.

A trial. Chance decided who did what.

Who: Latino residents of northern Manhattan, New York City, aged 40-64 without self-reported Alzheimer's disease (mean age 52, 69% women, 49% college graduates, 71% Dominican or Puerto Rican; 48% carried at least one APOE e4 allele). Excluded: previous APOE testing, family history suggesting early-onset autosomal-dominant AD, any suicidality at baseline

• Distress about resultnoneno clear change
• Depression, anxietynoneno clear change
• Upset by risk estimate2 vs 3told vs not told

More to know, from our read of the paper:

• Everyone had extensive education plus one-on-one sessions with board-certified bilingual genetic counselors who stressed that e4 is not deterministic; authors say adverse impacts were likely mitigated by this and results may differ for direct-to-consumer tests with little counseling. Do not generalise to home DNA kits
• Selection: people who completed APOE testing were younger, more educated and more likely to have a family history than those who did not; authors say adverse impacts 'may have been underestimated'. Mostly Dominican/Puerto Rican, urban NYC: may not generalise to other Latino communities
• A null result: say 'no clear difference', not 'gene results are harmless'. Authors analysed averages and 'cannot exclude the possibility of adverse effects in some persons with high vulnerability'
• Sample smaller than planned (374 vs 400 randomized); 80% power to detect >=0.46 SD per comparison. Loss to follow-up 11% / 26% / 36% at 6 weeks / 9 months / 15 months (no difference between arms); missing data multiply imputed
• All 12 e4 homozygotes (risk estimate 55%) were placed in the disclosure group for ethical reasons, not randomized

In this randomized trial, 374 Latino adults aged 40 to 64 in New York City got an Alzheimer's risk estimate from a genetic counselor. Half also learned their APOE gene result, the strongest known genetic risk factor for late-onset Alzheimer's. Over 15 months, distress, depression and anxiety did not clearly differ between the groups, and only 2 vs 3 people said they were upset by their risk estimate. Gene carriers reported a bit more distress at six weeks, which the authors judged not clinically significant. Everyone had education and counseling, so results may differ with home DNA tests.

We read the abstract and the full text of this paper and checked every number on this page against it (17 facts, checked on 2026-10-29). The study design is named above. Cohort and other observational studies are described as linked, not proven. Found an error? Email theis@onestudyaday.com.