Would you want to know you have an Alzheimer's gene?
If you carried a gene that made it more likely you would someday get Alzheimer's disease, would you want to know?
How would you react to knowing that your risk for getting the progressive, fatal brain disorder was 50 percent?
A University of Michigan study out in today's New England Journal of Medicine suggests that people react much better to the news than expected. Disclosure of the genetic testing results in adult children of Alzheimer's patients did not have short-term psychological effects -- even in those who were told they carried the gene. Those who found out they did not carry the gene were relieved, though even without the gene, someone can still get Alzheimer's.
Widespread testing for the apolipoprotein E genotype is not done, mostly because there is nothing anyone can do with the information that they have the gene. Besides, plenty of people have the gene and never get Alzheimer's. If treatments progress in the future, this knowledge could be useful, but at this point it is not.
There is genetic testing for Huntington's Disease, a fatal neurodegenerative disorder. If you have the gene, sooner or later you will get this awful disease that has no cure. There has been a lot of debate over whether people who have a parent with the disease should be tested for the gene. Some people opt against it, not wanting to know they have a death sentence.
Dr. Constantine Lyketsos, an Alzheimer's expert at Johns Hopkins Bayview Medical Center, told me he thinks the most important finding in the New England Journal of Medicine paper could be that people generally take bad news pretty well. They may suffer temporary distress, "but most people get over it pretty quickly."
One drawback of the study, though, was that researchers weeded out people who suffered from any anxiety or depression. Those folks might have more trouble handling the news.