Emotional Responses to APO E Genotype Disclosure for Alzheimer Disease

Abstract

The purpose of our study is to assess the emotional responses to disclosing APO E genotype to asymptomatic older adults at increased risk for Alzheimer disease (AD). This is a longitudinal cohort study of volunteer subjects who were aged 50 years or over, asymptomatic for (AD), had a family history of AD, passed a psychological assessment, and participated in pre- and post-test genetic counseling and three follow-up visits over 10 months. We analyzed responses by three emotional constructs: depressed, worried, and relieved. Three hundred and twenty-eight subjects were screened, 76 received their APO E genotype. When emotional responses occurred it was immediate, between baseline and the 1 month follow-up. Emotional reactions did not change significantly past 1 month. Our results suggest that for emotionally stable persons, disclosing results of their APO E genotype, high risk subjects did not report more depression or worry and low risk subjects felt relieved by knowing the results. Future studies should evaluate the risks of disclosure to family members involved in the diagnostic work-up of a relative and include subjects from a broader range of emotional stability and socioeconomic background.

To Know or Not to Know: An Update of the Literature on the Psychological and Behavioral Impact of Genetic Testing for Alzheimer Disease Risk

“…In a qualitative component assessing a sub-sample of the same cohort, participants (n=29, 48%) reported feelings of relief after APOE result disclosure, including four participants who received e4-positive results (Gooding et al, 2006). This result confirms the findings from another prospective study of 76 asymptomatic individuals with a family history of AD (Romero et al, 2005). Participants in this study reported feeling reassured by receiving their genotype results, regardless of the result itself.…”

“…Six articles described the psychological impact of genetic testing for AD risk, two in the context of predictive testing for dominantly inherited AD (Steinhart et al, Molinuevo et al, 2005), and four in that of APOE susceptibility testing (Romero et al, 2005;Gooding et al, 2006;Green et al, 2009;Ashida et al, 2010).…”

A systematic review of perceived risks, psychological and behavioral impacts of genetic testing

“…The results of these three studies were conflicting: one reported increased worry in carriers and decreased worry in noncarriers at 2 weeks, 35 one found less worry in both carriers and noncarriers at 1 month, 44 whereas the third reported increased worry in carriers compared with noncarriers throughout the 12-month follow-up period. 13 …”

“…43,44 In the studies on HBOC, the vast majority of participants were female. One study included both men and women 13 whereas another was specifically designed to assess the impact of genetic testing on behavior in men.…”

“…Two studies, one on HBOC and the other on HNPCC, reported a brief increase in depression at 2 weeks posttest in carriers. 30,35 Also, one study on HNPCC reported decreased depression scores at 1 month, 44 whereas another found scores to be lower at 4 months. 25 There were no differences in depression scores between groups for HBOC, HNPCC, or AD at any time point beyond 2 weeks.…”