Some doctors questioning at-home Alzheimer's test

Dr. Kim reporting A controversial at home test promises to answer a difficult question: Are you at a high risk of developing Alzheimer's disease? But now some doctors are raising questions about the results.

The test allows you to find out if you have a gene linked to Alzheimer's. You can get it done in the doctor's office, but there's growing demand for home testing. Now, thanks to the Internet, you can do just that. But the question is, do you need it?

Florence Spano makes sure her 88-year-old mother, who is bedridden with Alzheimer's, gets flowers every week. "You lose the person in stages, so we've had to mourn the loss of her many different times," she said.

The disease runs in her family. Now Spano worries her children will suffer like she has. "It's very difficult to see a loved one incapacitated like this," she said.

Hoping to ease any burden, Spano wants to take a new at-home genetic test to determine her risk for developing the disease. The test, called Alzheimer's Mirror, is marketed directly to healthy consumers.

With the click of a mouse and $400, you can get a kit. Inside the kit there's a little container. Follow the directions, spit into the cup, and send the saliva back to a lab for genetic testing. Then, within three weeks, a genetic counselor will call you and give you the news of whether you carry a gene that increases your risk of Alzheimer's.

Julian Awad of Smart Genetics developed the test after watching his grandfather die from the disease. "It's just a very personal decision," he said. "It's devastating to a family, and I think the more you know, the more you can prepare and be ready for that."

But how ready can you really be? A positive test does not guarantee you will get Alzheimer's, and a negative test is no guarantee that you're home free. "The disease is more complicated than one gene," he said.

Dr. Michael Weiner, an Alzheimer's specialist with the San Francisco VA Medical Center, says while everyone agrees this one gene increases risk, the main risk happens to be age.

"So why do this test? What information will it give you?" Weiner said. "We don't use it in a diagnosis. We don't use it in practice. It's not approved by any of the medical societies."

Also, since the results are not definitive, experts say if misunderstood, they may cause undue anxiety. "If they learn their risk is increased, their mind seems to jump very quickly to, ‘Oh! I'm sure I'm going to get that!' And actually, the risk can be quite tiny," said medical geneticist Dr. Patricia Kelly.

Kelly has helped patients understand genetic risk for 25 years. She sees a real danger in these direct-to-consumer tests. "I've seen people who have gotten quickly tests, and it takes me a lot of time to help undo the damage that was done to them," she said.

Smart Genetics provides a personalized report to share with your doctor. However, the Alzheimer's Association fears tests like these do more harm than good.

As for Spano, she wants to be prepared for her children's sake. "I want to make it an easy transition if it happens. I don't want them to have to [ask] back and forth, ‘Is this the right decision? Is this the wrong decision? What would Mom want us to do?'" she said.

The other issue is if you test positive, there's nothing you can do to prevent Alzheimer's. A lot of data suggests you can reduce the risk by living a healthy lifestyle and keeping your mind busy. But once again, that's not a guarantee.

E-mail: drkim@ksl.com