Early Testing for Alzheimer’s: What Are The Ethical Costs?

This transcript has been edited for clarity. 
Hi. I’m Art Caplan, at the Division of Medical Ethics at NYU’s Grossman School of Medicine. 
Some really exciting, interesting, and thought-provoking news broke recently. A publication appeared in JAMA following an announcement at a huge Alzheimer’s Association conference that took place in Philadelphia, reporting that a team in Sweden has developed a blood test that allows a better than 90% accurate diagnosis of Alzheimer’s disease.
I think many watching know that the most reliable way, for a long time, to diagnose Alzheimer’s was only on an autopsy, where you had to look at the brain. There have been some improvements in testing since then, I know. People are doing a little better with MRI and other types of scans, and there are some tests that have reached maybe 65%-70% accuracy, but they’re expensive and take a long time.
This test basically could detect the tau protein that people think is responsible for gunking up the brain in an early form in the blood and could give a pretty accurate diagnosis. That, I think, is overall very good news. 
For one thing, many people struggle, along with their doctors, to decide or determine whether they have Alzheimer’s. They start showing symptoms or have memory issues, and they’re worried — is this Alzheimer’s or isn’t it? 
With the test, you could allay some fears. Something else may be going on, such as mini-strokes, Lewy body [dementia], or just a progression of aging that is not associated with a brain disease. I think that would bring relief and calm to people even to know what’s going on a nd know that they have it, although it’s not a diagnosis that anyone looks forward to because there are only minimal interventions available now to do anything about Alzheimer’s. Still, I think people and doctors who treat them do want to know what they are dealing with.
There’s certainly a sense that, ethically, maybe you wouldn’t offer this test earlier than symptoms appear because there isn’t anything that can really be done to prevent the progression of the disease. I’ve seen some doctors already say that. I doubt that’s going to hold. 
People are so worried about Alzheimer’s, and there’s so much money to be made in selling this kind of testing. There are so many people fearful that I think the barrier of, if you will, saying, “We don’t test until you show symptoms,” is never going to hold. 
I think we’ll probably have to prepare for a time when doctors will have to counsel their patients about what it means to get a test before symptoms, what a positive test result might mean, and what a negative test result might mean. It doesn’t rule things out for Alzheimer’s completely, but it certainly makes it less likely you’re going to get it. 
Some people may say, “I still want to know, even if there are no treatments. I’ll plan a trip. I’ll change my career plans. I’ll get my life arrangements in order.” It’s not good news. It’s tough news. They may need psychological support, but there it is. 
I think the other big issue about this form of testing that’s going to face the health professions is that there are certainly people who are going to say that we need an affordable test. I don’t know how this one is going to price out. It’s a blood test, but again, bringing peace of mind to people with symptoms is something that we’re going to have to be able to institute and be able to afford. 
With so many people afflicted with Alzheimer’s, worried about Alzheimer’s, and showing Alzheimer’s symptoms, if we have tests that cost $1000-$2000 or more to administer and then require counseling to go with it, these are not sustainable costs. 
Right away, we need to be looking at and pressuring those who might manufacture the tests. They have to come in in an affordable manner. 
This is good news because when you can predict, I think that’s always a plus. This is controversial news because we don’t have much we can do if the outcome predicted is poor, and we may get swamped with costs that make this test not available to all who might well benefit from it. It’s time to start planning for that now. 
I’m Art Caplan, at the Division of Medical Ethics at NYU Grossman School of Medicine. Thank you for watching.