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Fearing Punishment for Bad Genes

About 700,000 Americans have had their DNA sequenced, in full or in part, and the number is rising rapidly as costs plummet — to $1,000 or less for a full genome, down from more than $1 million less than a decade ago. But many people are avoiding the tests because of a major omission in the 2008 federal law that bars employers and health insurers from seeking the results of genetic testing.

The Genetic Information Nondiscrimination Act, known as GINA, does not apply to three types of insurance — life, disability and long-term care — that are especially important to people who may have serious inherited diseases. Sponsors of the act say that they were well aware of the omission, but that after a 14-year effort to write and pass the law, they had to settle for what they could get.

That leaves many patients who may be at risk for inherited diseases fearful that a positive result could be used against them.

They include Brian S., a 33-year-old surgical resident in Pennsylvania, who has a 50 percent chance of carrying a genetic mutation that causes Cadasil, a fatal neurological disorder that afflicts his mother. “I kind of want to get tested,” Dr. S. said, speaking on the condition that his last name and other identifying details be withheld. But because he wants to apply for life and long-term-care insurance, he has decided against it.

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