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Buyer Beware! Know What You're Getting When You Buy Online Genetic Tests

Saturday, September 19, 2009 General News J E 4
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WHITE PLAINS, N.Y., July 8 They may offer to predict your baby's height, eye color, or athletic ability, and they may even suggest they can predict your risk for cancer, diabetes, Parkinson disease or obesity.

But many of those at-home genetic tests (also known as direct-to-consumer or D-T-C tests) marketed online really can't deliver -- not with any degree of certainty, experts say.

"Buyer beware! These tests are marketed to new and expecting parents and take advantage of their dream of having the perfect baby," says Dr. Jennifer L. Howse, president of the March of Dimes. "Consumers should be extremely cautious before spending the money -- and risking their privacy -- on such tests. Genetics is an exciting new frontier, but the current marketing of these tests raises ethical and medical questions."

The March of Dimes National Communications Advisory Council addressed the pros and cons of direct-to-consumer genetic testing at its bi-annual luncheon titled "Testing Your Personal Genome: What the Tests Can and Cannot Tell You."

Speakers included Siobhan Dolan, MD, MPH, associate professor, Clinical Obstetrics & Gynecology and Women's Health at Albert Einstein College of Medicine, New York, a faculty member of the Human Genetics Program at Sarah Lawrence College, and a genetics consultant to the March of Dimes; and Lori B. Andrews, JD, Distinguished Professor of Law and director of the Institute for Science, Law and Technology at Chicago-Kent College of Law, and co-chairperson of the March of Dimes Bioethics Advisory Committee.

The March of Dimes says some genetic tests conducted by a trained professional can provide information about the health risks a woman may face over her lifetime. Tests can also tell a woman if she is the carrier of certain genetic diseases that can be passed on to a child. Working with a health care provider to order and interpret such genetic testing can provide much-needed guidance during the process.

Both speakers pointed out that direct-to-consumer tests are unregulated and noted that the tests are more for entertainment than for useful medical information. Even if a genetic test indicates a statistical predisposition toward a disease or characteristic, it is not a diagnostic test and cannot predict with certainty if the disease will develop.

In fact, the speakers said, we now understand that many diseases or characteristics are more complex than previously thought, resulting from the interaction of numerous genes, behaviors, and the environment - both in the womb and after birth.

Direct-to-consumer test results can have many unintended consequences, say Dr. Dolan and Ms. Andrews, such as:

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com or nacersano.org.

-- People often misinterpret results showing a disease susceptibility to mean it's a given that they will become ill. This can lead to unnecessary surgery or requests to doctors to treat patients for diseases for which they have no symptoms and may never develop. -- Other individuals believe that because a test shows they are at low risk for a condition such as heart disease, their behaviors won't make difference. Such a person may react by eating too many fatty foods and avoiding exercise, thus putting them at greater risk of heart disease. -- Parents might be tempted to test their infants or young children for late-onset conditions such as Huntington disease, although medical professionals recommend not testing for these disorders in those under the age of consent. -- There is no way to know what happens to the genetic material after the testing -- a privacy issue.

SOURCE March of Dimes
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