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Genetics for the DIY set

Will I get cancer? Should I take zinc? At-home gene tests say they'll tell you--but their advice is often suspect.

August 21, 2006|Judy Foreman | Special to The Times

What the GAO found, in some cases, was laughable. One site claimed that its expensive dietary supplements could repair DNA damage -- which no pill has been shown to do. Others offering supposedly personalized results told smokers to quit and nonsmokers to continue to abstain. The GAO cautioned, in particular, against tests that purport to tell, by a sample of DNA, that the consumer should buy "personalized" dietary supplements. Not only are these recommendations unlikely to be meaningful, but the supplements sometimes are sold at inflated prices -- at a cost of $1,200 a year, for example, when the same ingredients could be purchased at a local store for $35 a year.

Despite such concerns, the market for all types of genetic testing is likely to soar. A 2002 Harris poll showed that 80% of adults think genetic testing is a good thing and half said they would want a test for a serious medical condition even if there were no way to prevent or treat it. The poll also showed that people are willing to spend hundreds of dollars out-of-pocket to get genetic tests.

Given that demand, the big issue will be making sure that consumers get the right tests, that the tests are valid and that results are interpreted by trained genetic counselors, said Kelly Ormond, immediate past president of the National Society of Genetic Counselors.

That's a tall order. There are only 2,000 to 3,000 trained genetic counselors in the U.S., who typically have Master's level training, plus another 1,500 or so physicians and some nurses who specialize in genetics.

And that, said Ormond, means that those who opt for direct-to-consumer genetic testing must be extra savvy.

Before handing over your credit card number, ask the company what its test means. Will it show that you have a clear susceptibility to a certain disease, or just a pattern of clues that may or may not be meaningful? Are there data to show that if you have a "bad" gene you will very likely get sick later in life, or is that gene just one of many risk factors?

Also, think carefully about the privacy issue, it's a tricky one. If you are truly at risk for a serious disease, chances are you'll see a doctor and that information will wind up in your medical record anyway. And if you are asked by an insurance company if you've had such a test and you answer "no," that would be fraud.

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