And personal horror stories abound. With a disease like Huntington's, where children aren't tested and no one knows until they are adults who will get the disease, some companies deny all at-risk children coverage. Others don't.

In a recent survey, 22 percent of the people with a known genetic condition in the family said they had been denied health insurance coverage because of their genetic status.

A woman with Huntington's in her family suggests that people who are at risk can get insurance, as long as they don't tell about their at-risk status. That may mean not even discussing it with a family physician, whose medical records may be requested by insurance companies, she said.

The important thing to remember, she said, is that you don't "have" Huntington's until symptoms appear, even if you have the genetic mutation. Only then must you list it on an insurance form.

But she cautions people to be careful about the "cause of death" question insurance companies ask: Are your parents — and sometimes siblings — living or dead and what did they die of?

It's always possible to get life insurance, Perry said. But the cost of the premiums could be significant.

You can get health insurance, too. If you can afford it.

And there's another problem with Huntington's, even with good insurance. Most health plans carry a limit on or exclude mental-health coverage. Since much of the treatment offered for Huntington's is psychiatric in nature, policies often try to exclude it.

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It was against this backdrop of insurance concerns and outright fear that John and Lael Askew's children wrestled with the question of finding out, individually, whether they carried the Huntington's gene.

The decision on whether to be tested was very private and very painful, Scott Askew remembers. He swayed back and forth. Divorced, with a young daughter, he didn't see how knowing would help him. And he was approaching the prime age for showing signs of Huntington's.

But he desperately wanted to know that his daughter wasn't going to be affected by the disease.

Still, he wavered and put off making a decision.