Genetic testing can predict illnesses, but many don't want to know

Luke Hilger has been anticipating his 18th birthday for years, but not just for the usual reasons. Hilger has known since he was 12 years old that Huntingtons Disease runs in his family. Hes watched his mother steadily decline during the past five years, in the grip of what many in medicine believe to be among the bodys cruelest illnesses.

Huntingtons usually strikes people in their 40s. It causes nerve cells in the brain to break down. Sufferers lose control of their muscles and begin to twitch uncontrollably. Then they lose their ability to think. Eventually they develop depression and dementia. There is no cure.

There is a genetic test that will tell Hilger if he is destined to get Huntingtons. For the past five years, anxious about the possibility that he would suffer the same fate as his mother, Hilger was certain he wanted to take the test. But physicians, citing ethical considerations, told him he would have to wait until he was 18.

Hilger, who lives with his parents outside Salem, turns 18 in four months. He has attended national conferences for families of Huntingtons victims. He has looked for physical signs that he might be among those who get an early onset version of Huntingtons. And he has made a choice. He no longer wants to know his fate.

The idea was, I had to know, Hilger says. I had to know because its going to help me sleep at night.

But now, Hilger says, hes figured out that for him, the stress of not knowing is more bearable than if he takes the test and discovers he will suffer as he has seen his mother suffer.

Three weeks ago, scientists announced a promising new blood test that experts say within 10 years should be available to predict who is going to get dementia-causing Alzheimers disease. Physicians can use a brain scan to detect amyloid plaque buildup that has been associated with Alzheimers. Though the amyloid test is far from refined as a predictive tool, neurologists such as Eran Klein at Oregon Health & Science University say they are getting more inquiries from patients who want the test. Patients want to know if they are going to get Alzheimers, even though the disease has no cure and there is little therapy to ease its brain-decaying symptoms.

Hilger and Kleins fate-seeking patients are not medical oddities. They are, scientists and bioethicists say, a first wave that eventually could grow into a tsunami. As genetic testing and brain scanning become more widely used and better understood, most of us will have opportunities to know ahead of time what diseases we are likely to contract. The question is, will we want to? Only about one in five people with family histories of Huntingtons choose to take the genetic test that preoccupies Hilger.

Theres this technological paradigm that more information is always better, Klein says. But sometimes more information just complicates.

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Is there a disease in your future?

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