Boston -- Adult children of people with Alzheimer's disease were satisfied and unharmed by the experience of genetic risk assessment, even when results suggested they might be at risk, according to new findings presented by Robert C. Green at the recent International Conference on the Prevention of Dementia, sponsored by the Alzheimer's Association. Green, a medical doctor and professor of neurology at Boston University School of Medicine, led the team that conducted the study.
The study focused on the psychological and behavioral impact of testing for the well-known risk marker for Alzheimer's disease, ApoE4, one form of the apolipoprotein E (APOE) gene. When the team compared data from participants who had been told they were either positive or negative for ApoE4 with those from participants who had not had their ApoE4 status disclosed to them, the researchers found no significant difference in tests for depression and anxiety.
Moreover, 95 percent of participants reported that they would choose risk assessment again and 82 percent would recommend risk assessment to family or friends.
"As new treatments are developed to delay the onset of Alzheimer's, it is going to be critical to identify those at greatest risk," says Green. "At the same time, it will be very important that genetic risk assessment is done carefully and communicated accurately so individuals feel empowered by the results and are able to maintain a positive outlook and a good quality of life."
For the study, the researchers randomized 162 study participants from Boston into two groups -- one received assessment based on age, family history, gender, and disclosed APOE genotype; and one received assessment based only on age, family history and gender.
After one year, the team found no significant differences among the groups (ApoE4 positive, ApoE4 negative, or no disclosure) when assessing them using the Center for Epidemiological Studies' Depression Scale and Beck Anxiety Inventory.
Those in the study who tested positive for ApoE4 and were alerted to their genetic status were 5.8 times more likely to have altered their long-term care insurance than individuals who did not receive genotype disclosure.
"The study suggests that people who are armed with useful information about their possible future healthcare needs will take steps to protect themselves financially," says Green.
According to Green and his team of researchers, the REVEAL study (Risk Evaluation and Education for Alzheimer's disease) is the first randomized trial to examine the impact of providing risk assessment -- including APOE gene marker disclosure -- for Alzheimer's disease. Their study was supported by the National Human Genome Research Institute and the National Institute on Aging of the National Institutes of Health.
The Alzheimer's Association, the world leader in Alzheimer research and support, is the first and largest voluntary health organization dedicated to finding prevention methods, treatments, and an eventual cure for Alzheimer's. For 25 years, the association has provided information and care consultation, created supportive services for families, increased funding for dementia research, and influenced public policy changes.
Boston University School of Medicine, founded in 1848, is a leading academic and research institution, with an enrollment of nearly 1,000 students and more than 1,000 full-time faculty. Nationally renowned for its programs in heart disease, hypertension, stroke, pulmonary disease, arthritis, Alzheimer's disease, autism, alcoholism and drug addiction, among others, in the past year it ranked 13th among U.S. medical schools in total dollars of National Institutes of Health funding.
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