Do You Want To Know If You're At Risk For Alzheimer's?
And if you were, would you want to know?
That's the ethical dilemma researchers at Butler Hospital and about 60 other sites nationwide will be grappling with as they recruit participants for a new clinical trial.
They'll be testing whether a drug called solanezumab (versus a placebo) can reduce the build up of amyloid plaque in the brain. Those plaques are among the earliest evidence of changes in the brain leading to Alzheimer's. Researchers believe these plaques begin to build up as soon as 10 - 15 years before the clinical symptoms of Alzheimer's - cognitive decline, memory loss, etc. The idea is that if you can intervene in the development of these plaques before it's too late, you prevent cognitive decline. (If you're between the ages of 65-85 and interested in participating in the study, visit Butler's web site.)
In order to participate in the trial, potential subjects will have to undergo a PET scan of their brain (a kind of imaging) to look for evidence of these amyloid plaques. If those plaques show up on a PET scan, you're at risk of developing Alzheimer's.
Imagine hearing that news: you've got no symptoms of Alzheimer's, but your brain is showing signs that you could be headed for this devastating disease. What do you do with that information?
In a recent Health Affairs issue devoted to the "long reach" of Alzheimer's in this country, authors of an article about the challenges of recruiting participants for clinical trials point this out:
"Little research has been done to determine how healthy people are affected by learning their Alzheimer's risk status."
Dr. Stephen Salloway, who's leading the trial at Butler, told me that part of their research will involve looking at exactly that. This is new territory, in a way. Up until now, most Alzheimer's trials have focused on treating the disease in progress, mitigating symptoms. Now we're moving into research looking at ways of preventing the disease in people with no symptoms. And that will require finding folks who are at risk. Whether or not enough of them will want to know that or not is an open question.