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| Science & Technology |
| The government (and others) has your baby's DNA |
| 2010-02-05 |
| Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center. In many states, such as Florida, where Isabel was born, babies' DNA is stored indefinitely, according to the resource center. Many parents don't realize their baby's DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents' concerns are sparking a new debate about whether it's appropriate for a baby's genetic blueprint to be in the government's possession. Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don't first ask permission to screen babies for genetic diseases. "It's paternalistic, but the state has an overriding interest in protecting these babies," he says. However, he added that storage of DNA for long periods of time is a different matter. "I don't see any reason to do that kind of storage," Caplan says. "If it's anonymous, then I don't care. I don't have an issue with that. But if you keep names attached to those samples, that makes me nervous." Genetic testing for newborns started in the 1960s with testing for diseases and conditions that, if undetected, could kill a child or cause severe problems, such as mental retardation. Since then, the screening has helped save countless newborns. Over the years, many other tests were added to the list. Now, states mandate that newborns be tested for anywhere between 28 and 54 different conditions, and the DNA samples are stored in state labs for anywhere from three months to indefinitely, depending on the state. The specimens don't always stay in the state labs. They're often given to outside researchers -- sometimes with the baby's name attached. According to a study done by the state of Minnesota, more than 20 scientific papers have been published in the United States since 2000 using newborn blood samples. The researchers do not have to have parental consent to obtain samples as long as the baby's name is not attached, according to Amy Gaviglio, one of the authors of the Minnesota report. However, she says it's her understanding that if a researcher wants a sample with a baby's name attached, consent first must be obtained from the parents. Scientists have heralded this enormous collection of DNA samples as a "gold mine" for doing research, according to Gaviglio. |
| Posted by: Anonymoose |