O3‐02‐01: Direct‐to‐consumer Genetic Testing for Risk of Alzheimer's Disease (ad): the Psychological and Behavioral Impact of Apoe Genotype Disclosure
Year: 2014
Type: article
Study design: Observational Study
Abstract: Direct-to-consumer genetic testing has generated considerable ethical and policy debate, with concerns raised about providing sensitive health-related information such as APOE genotype. Little is known, however, about the impact of disclosing genetic risk for AD in this format. A longitudinal, web-based survey of customers of the personal genomics company 23andMe was conducted from March 2012 - April 2013. A baseline assessment was administered to customers prior to their receiving test results, followed by surveys at ∼1 and ∼6 months after they viewed results. 1,004 customers (mean age = 50 years, 57% female) provided survey data. At baseline, ∼70% reported being very interested in receiving AD risk information, and 13% chose not to unlock their personal results. APOE genotype status was consistent with population prevalence estimates, with 75% of participants found to be APOE e4-negative, 23% e4-heterozygotes (E4-HT), and 2% e4-homozygotes (E4-HM). Mean lifetime AD risk estimates conveyed to these groups were 4.5%, 14% and 43%, respectively. Group comparisons showed no post-test differences in general depression or anxiety symptoms, but time-averaged test-specific distress was slightly elevated in both E4-HMs (Δ=0.60, p=0.031) and E4-HTs (Δ=0.20, p=0.004). Both the E4-HT and E4-HM groups showed significant increases from baseline in perceived risk of AD. As compared to the other groups, E4-HMs were more likely to report changes in vitamin use (47% vs. 16%, p = .01), nutritional supplement use (33% vs. 12%, p = .05), and intentions to make insurance changes (7% vs. 2%, p = .04). No post-test group differences were observed in self-reported diet or exercise behaviors. Findings suggest that genetic risk information for AD is of great interest to consumers of personal genomics services and that provision of higher-risk results significantly affects consumers' perceived likelihood of AD and their engagement in preventive health behaviors and advance planning. On average, respondents receiving higher-risk results showed slightly elevated levels of distress, but did not evidence symptoms of clinically significant depression or anxiety. Study results are largely consistent with findings on the impact of APOE genotype disclosure when conveyed by genetic counselors in more traditional clinical encounters.
Source: Alzheimer s & Dementia
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2086419962