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It’s one of the big questions surrounding genetic testing: Do people really want to know they’re at high risk for specific diseases, especially if they can’t prevent them?
A new study says yes. Almost all volunteers who learned they’re prone to get Alzheimer’s disease said they were pleased to get the information. They were not, as some might expect, utterly devastated.
“Some people are information seekers, and they just feel better and more complete when they have more information,” said study lead author Dr. Robert Green, an Alzheimer’s specialist at Boston University.
One of my friends worried that I would freak out when the results came in. But I didn’t, figuring that I would just get screened for these diseases earlier than usual. They are, after all, thought to be preventable with screening, at least to an extent.
Not so for Alzheimer’s. While they can treat symptoms once someone gets the disease, scientists don’t know how to stop it from happening in the first place. Keeping your brain busy might help — or it might not.
Still, Alzheimer’s was included in my list of results. Based on my genetic profile I had when I was born — and nothing about the life I’ve lived — my risk of getting Alzheimer’s is 4.4 percent. The average for men is 9 percent.
In the new study, published today in the New England Journal of Medicine, researchers gathered 162 volunteers who had at least one parent with Alzheimer’s disease, placing them at higher risk.
Some of the volunteers got genetic testing and others did not. The researchers compared the two groups to see if those who got bad news were especially stressed.
On the whole, they weren’t, even those who were told they have a 72 percent risk of getting the disease.
“In this admittedly small sample, they did not seem to have devastating psychological responses,” Green said.
Some told their families about the risk, and some were inspired to buy long-term care insurance. According to Green, long-term care insurers don’t use genetic test information against applicants, although they legally can do so.
If people are at higher risk of Alzheimer’s, an accompanying study finds that they’re also at higher risk of having cognitive problems in their 50s. That suggests that Alzheimer’s begins to take root long before people typically develop noticeable symptoms.
“Things are happening a lot earlier than we thought,” said study lead author Dr. Richard Caselli of the Mayo Clinic in Arizona.
To those of us “information seeker” types, that’s good to know, even if it’s more interesting than actually useful.