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Do At-Home Genetic Tests Tell Too Much and Explain Too Little?
Date:4/2/2011

apitalism might create. A recent undercover study of 15 direct-to-consumer tests by the U.S. Government Accountability Office found "egregious examples of deceptive marketing, in addition to poor or non-existent advice from supposed consultation experts," according to a recent report in The Lancet.

The bottom line, Lieber said, is that an increasing number of companies' bottom lines are impacted by people's desires to live longer, healthier lives.

"My sense right now is it's very much about those companies making money," said Lieber, whose human genetics master's program at Sarah Lawrence is the nation's first and largest. "The cynic in me says they're doing it mostly to make money, but I do think that's changing. Now phone counseling is being offered, and it's better than not having anything."

Whether conducted by phone, Internet or in person, such counseling -- if done by qualified experts -- can help translate hard science into information that the average consumer can understand. For example, if a genetic test shows a low risk of diabetes, that doesn't mean that diet, exercise and other healthy lifestyle measures aren't necessary, said Dr. Robb Rowley, an internal medicine physician at Amigenics, a Las Vegas-based genetic testing and counseling group.

"At this point, I still recommend genetic testing be done through a health-care provider," said Rowley, whose patients mostly consult on their predisposition to cancer. "Some have dire consequences . . . and without having a physician involved, people might do something [to change their lives] that they wouldn't otherwise do."

Lieber said she thinks most who order at-home tests are unaware counseling exists to help them interpret the results. Others, she suspects, don't want the scrutiny of outsiders knowing their personal medical history.

"Probably my biggest concern is to have them understand genetic counselors are not there to tell people what to do. I th
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