To Test, Or Not To Test

It's game night for the University of Wisconsin Badgers and the pressure's on the team's charismatic center Jake Dowell.

This sophomore is such a gifted athlete that the NHL has come calling, but tonight Dowell is giving it his all for his biggest fan, his father.

As CBS News Correspondent Elizabeth Kaledin reports, it's the highlight of his father's life to come see his son play.

"I think it really is," says Jake.

Three years ago John Dowell was diagnosed with Huntington's disease, a fatal genetic disorder characterized by jerky uncontrollable movements and the gradual loss of all body and brain function.

"I first started feeling like I had an ear infection," he says.

Symptoms generally kick in in the 30s and can take 20 years to run their cruel course. There is no cure, so for now, the Dowells manage John's illness with numbing drugs and even more numbing days.


"I am sick because the only thing I can do is watch TV and that's so boring," says John Dowell.

Once an active athlete, John Dowell coached his sons through every sport imaginable. Now he has to coach them through the unimaginable.

Prior to being diagnosed with it, John Dowell didn't have any idea what it was.

Nor did he know that the gene passes from parent to child. Jake and his brother Luke each have a 50 percent chance of having it themselves.

The gene was isolated and identified in 1993. Today a simple test can tell Jake within hours if he has it.

Now this star athlete, who's used to facing off against the toughest competitors, must face up to an agonizing dilemma: test for the Huntington's gene and face a death sentence or just skate on.

"I think there's a huge amount of social pressure on people to get tested," says neuropsychologist Nancy Wexler.

Wexler says genetic testing for incurable diseases is a double-edged sword.
Our culture values knowledge not ignorance, so not wanting to know is often criticized, she says.

She's intimately familiar with the topic. Her mother died of Huntington's. She's devoted her career to finding the gene, yet ironically she's chosen not to get tested.

"I know that with me, if I were to go to bed every night thinking I'm going to die of Hungtington's, you know, why should I bother getting up?" says Wexler.

For now, Jake Dowell has made the same decision. Until he wants a family, he'll stay in the dark.

"If I test positive for it, I'll feel what's it doing for me to know," he says.

With his life and a professional hockey career in front of him, and his father still in the stands, he's hoping for a greater goal: that someday soon there'll be a cure.

  • Jaime Holguin

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