David Paul Morris/Bloomberg via Getty Images
Slides containing DNA sit in a bay waiting to be analyzed by a genome sequencing machine.
Getting the results of a genetic test can be a bit like opening
Pandora's box. You might learn something useful or interesting, or you
might learn that you're likely to develop an incurable disease later on
There's a federal law that's supposed to protect
people from having their own genes used against them, the Genetic
Information Nondiscrimination Act, or GINA.
Under GINA, it's illegal for an employer to fire someone based on his
genes, and it's illegal for health insurers to raise rates or to deny
coverage because of someone's genetic code.
But the law has a loophole: It only applies to health insurance. It doesn't say anything about companies that sell life insurance, disability insurance or long-term-care insurance.
"GINA was a fabulous accomplishment," says Robert Green,
a researcher in the genetics department at Harvard Medical School. "It
was long in coming and much needed. But I think that it was not
Green oversaw a study that examined how people react
after they learn they have ApoE4, a gene associated with Alzheimer's. He
found that people who discover they have the gene are five times more likely than the average person to go out and buy long-term-care insurance.
would be a natural thing that people might consider if they find out
that they are at an increased risk for Alzheimer's disease. This is a
logical outcome to getting genetic-risk information," Green says.
when people go make that "logical" decision, there's nothing stopping
the insurance companies from demanding to see the results of their
genetic test. In fact, a long-term-care company could legally require someone to take a genetic test before selling him a policy.
says it's especially ironic that GINA does not apply to long-term-care
insurance policies, since they cover the costs of nursing homes,
assisted living facilities, home health aides and other things that
people with Alzheimer's disease often need to use.
Slaughter, a Democrat from western New York, introduced GINA in the
House back in 2007. She says she fought hard for the law because she
didn't think it was fair that a few wayward strands of DNA could make
you essentially uninsurable.
"There were countless people in this country who were not eligible for insurance at all, simply by the way they were born," Slaughter says.
But she knows the law still has gaps that need to be closed. "And we plan to do that," she says.
If that happens, the insurance industry will have a thing or two to say about it.
works best when lots of people purchase policies but only a few
actually need to use them. Selling these kinds of policies suddenly
becomes unsustainable if genetic testing becomes widespread, and most —
or even all — of the people who buy long-term-care policies do so
knowing they're probably going to develop Alzheimer's sometime down the
When Green talked about his study to a room full of
insurance executives a few years ago, he found out just how frightened
the industry is of this scenario.
"These very mild-mannered
people in the audience got very, very heated," he says. "They were
standing up and saying, 'This kind of situation is going to put us out
of business.' "
A spokesman with the company Genworth,
the largest seller of long-term-care policies in the U.S., said in an
email to NPR that it doesn't want to lose its ability to "utilize all
information." Genworth isn't restricted by the law now, and it doesn't
want that to change.