Alzheimer's risk: Would you want to know?

Jul 15, 2009

When people learn they are predisposed to Alzheimer's disease, any depression or anxiety is not long lasting, a new study indicates.

These findings help address a longstanding debate about whether learning such information might cause lasting psychological harm, at least among those with a of Alzheimer's disease, says Scott Roberts, a University of Michigan researcher at the School of Public Health and co-author of the study findings, which appear today in the .

People with a family history are already at higher risk, which is further increased if they also carry a certain version of the gene called Apolipoprotein E (APOE).

Roberts and colleagues at Boston University, Case Western Reserve University, and Cornell Medical College tested 162 people with a parent with Alzheimer's, which means their risk for developing the disease by age 85 is about 30-35 percent, compared with the general population risk of about 10-15 percent.

After an educational session about Alzheimer's and genetic testing, researchers tested people for their APOE genotype to learn if they carried the genetic variant. The presence of the gene increases the risk for those with a family history of Alzheimer's to more than 50 percent. For subjects who did agree to the test, specially trained genetic counselors then disclosed results and researchers followed participants over one year to determine the impact of risk information.

The researchers measured anxiety, depression and test-related distress after six weeks, six months, and one year. Test-related distress did increase slightly at six weeks for people with the risk-increasing form of the gene, but not at 6 months or one year, Roberts said. Anxiety and depression levels remained stable.

"Some people might say, 'I'm thinking about this a lot,' but it didn't translate into long-term or ," Roberts said. "The findings show if you do (disclose this genetic information) genetic counseling may be an important component to ensure that most people do not respond with significant distress.

"Genetic counselors help put the test results in context so that people understand the meaning and limits of the results," Roberts said. For example, for participants with a 55 percent lifetime risk, counselors explained that there was a 45 percent chance that they would never develop the disease.

The APOE link to Alzheimer's was identified in the 1990s, and traditionally, the medical community doesn't favor disclosure of the APOE genotype---or other genetic markers---unless telling patients directly impacts clinical treatment, Roberts says. However, now that private companies offer genetic testing for a variety of conditions, the debate over clinical utility versus personal utility is growing.

Some argue it's paternalistic to tell people what information they can or cannot know about their own genome, he says. After the initial educational session, 20 percent of the subjects opted out of the actual test, which means the majority wanted to know.

"I think most adult children of Alzheimer's patients would favor the right to at least have the choice," he said.

Roberts conducted this research while at Boston University. He came to the U-M in 2006.

Roberts is second author on the paper, called "Disclosure of APOE Genotype for Risk of Alzheimer's Disease," and co-principal investigator on the Risk Evaluation and Education for Alzheimer's Disease (REVEAL), a series of randomized clinical trials examining the impact of a genetic susceptibility testing program for adult children of people with Alzheimer's.

Source: University of Michigan (news : web)

Explore further: Routines most vital in avoiding Ebola infection: WHO

add to favorites email to friend print save as pdf

Related Stories

Gene tests and brain imaging reveal early dementia

Mar 06, 2007

Dementia diseases develop insidiously and are generally discovered when the memory has already started to deteriorate. New research form Karolinska Institutet shows, however, that approaching Alzheimer's can be detected several ...

Researchers find parental dementia may lead

Feb 19, 2009

People who have parents diagnosed with Alzheimer's disease or dementia perform less well on formal memory testing when compared to people of the same age whose parents never developed Alzheimer's disease or other dementia. ...

Recommended for you

Routines most vital in avoiding Ebola infection: WHO

13 hours ago

Meticulously following stringent routines when putting on and removing protective equipment is more important than the kind of gear health care workers use to ward off Ebola infection, the World Health Organization said Friday.

A look at latest Ebola developments

14 hours ago

No African countries are on the United Nations list of contributors to fight Ebola. With few exceptions, African governments and institutions are offering only marginal support as the continent faces its ...

Liberia opens one of largest Ebola treatment centers

15 hours ago

Remembering those who have died in the world's deadliest Ebola outbreak, Liberia's president opened one of the country's largest Ebola treatment centers in Monrovia on Friday amid hopes that the disease is ...

User comments : 0

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.