Today, President Bush signed a long-awaited bill that bars insurers and employers from discriminating against people based on genetic test results. If you've hesitated to get a genetic test for fear you'd be fired or turned down for health insurance, passage of the Genetic Information Nondiscrimination Act means you can breathe easier. (My colleague, Bernadine Healy, recently wrote about GINA and privacy concerns related to genomic medicine.) But just because you're curious about whether Uncle Joe's colon cancer runs in the family doesn't mean your insurer will pay for a test. There are more than 1,200 genetic tests on the market, and some of them cost thousands of dollars. Unless a test meets certain standards and it's pretty clear that you'll benefit from taking it, your insurer may well decide not to pay.
Coverage rules vary, but in general here are some of the considerations that may determine whether a genetic test is covered by insurance.
- Is the test itself accurate and reliable?
- Is it related to the prevention, diagnosis, and treatment of an illness?
- Will it drive clinical decision-making about appropriate treatment?
- Will it improve the clinical outcome?
So, for example, Aetna would cover the genetic test that looks to see whether you are one of the 5 to 10 percent of people who have genetic mutations associated with inherited colon cancer (assuming your family history and other factors make you a likely candidate). Having that information could be useful, because someone at high risk for colon cancer might start getting screening colonoscopies at age 25 instead of waiting until age 50, says Joanne Armstrong, Aetna's senior medical director, who directs their genetic testing programs.
Genetic testing for Alzheimer's disease, on the other hand, is not covered by insurers. A test that looks at variants of a gene that's associated with early onset of the disease doesn't reliably predict who will develop it, says Winifred Hayes, CEO of Hayes, a company that analyzes healthcare technologies. And even if it did predict without a doubt that you'd get the disease, "you can't change the outcome," she says.
This thinking may lead to conflicts between insurers and patients, who may want to know about their genetic risk even if that information isn't cut and dried. They may want to make long-term-care or estate-planning decisions, for example, based on the possibility that they may get a disease. This law at least makes it possible for them to go ahead and find out without risking a big bump in their premiums. But at this time patients may be out of luck in getting coverage, though that may change as these tests and our ability to treat disease advance.
Does the passage of this law make you more likely to be willing to get a genetic test?