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At Home Genetic Testing Not Same As Clinic

Counselors Say Mail Kits Can Be Misinterpreted

With increasing interest in genetic testing of all kinds, a number of Web sites have sprung up offering at-home genetic tests.

Although such offers are less common for blood tests such as that for the BCRA mutations, they do exist -- but they aren't necessarily a good idea, genetics counselors say.

DNADirect.com, for example, says its test kit offers patients "simple, painless" testing that's "completely private and can be anonymous if you wish."

Patients can also order test kits directly, although the company offers to work with physicians as well. First, patients have to call the company to discuss their family history. Then they receive a test kit in the mail and go to a patient service center to get blood drawn.

About a month later, the company calls the patient to discuss the test results and then a personalized report is sent to the patient. The company also offers patients a toll-free number to reach a genetic expert day or night.

Tests Have Risks

Easy, right? Maybe, but genetics counselors say people who choose mail-order tests might be putting themselves at risk.

"People say this is a blood test; you don't need to be counseled," said Whitney Ducaine, a certified genetics counselor at the Cancer Genetics Program at Beaumont Hospital in Royal Oak, Mich. "I think they're doing themselves a disservice. It's different than a cholesterol test. It has different implications."

Ducaine said she's talked to people who didn't get counseled properly before a BRCA test, and they had problems understanding the issues involved.

"They didn't get the right information," Ducaine said. "It's a little bit daunting to know people feel comfortable taking blood tests" without being fully informed.

Genetics experts also say that, when left alone with their test results, patients might misinterpret them.

"Most genetic tests have some level of ambiguity. Even if you test positive for BRCA1 and 2, it's not a given you'll get cancer," said Rebekah Hamilton, a University of Pittsburgh researcher. "It isn't totally black and white. The probability of cancer changes by decade of life. That's what's probably not going to be communicated by these mail-order places."

Even negative test results can be misinterpreted.

"If it's negative, people have the misconception that they'll never get breast cancer," Ducaine said. "There might be a different reason for breast cancer in the family. That's one reason why we only see people in person for test results."

Mary Ahrens, a genetics counselor at the University of Minnesota Medical Center, Fairview, said people who bypass genetics clinics miss out on the emotional support they get at clinics that give test results face-to-face.

The Federal Trade Commission issued a statement in July 2006 that encouraged consumers to take "a healthy dose of skepticism" when considering at-home genetic tests.

"The FDA and CDC say that because of the complexities involved in both the testing and the interpretation of the results, genetic tests should be performed in a specialized laboratory, and the results should be interpreted by a doctor or trained counselor who understands the value of genetic testing for a particular situation," the statement said.

The agency doesn't cast a net condemning all such companies; it simply emphasizes that consumers should be aware of the limitations of such tests.

The FTC also offers tips to people who are considering purchasing an at-home genetic kit.


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