2010-02-04 The government has your baby's DNA

2010-02-04 Elizabeth Cohen CNN \bioethics\healthcare\fearmongery\US/healthcare/reform/2009/disinfo http://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/ The government has your baby's DNA The government has your baby's DNA  When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.

While grateful to have the information -- Isabel received further testing and she doesn't have the disease -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel's genes in the first place. After all, they'd never consented to genetic testing.

It's simple, the pediatrician answered: 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.

"We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance." This is just one more argument for healthcare reform, then, isn't it? The only reason it might affect her ability to get health insurance is if health insurance has the ability to turn her down for a "pre-existing condition". And no employer should be able to turn anyone down solely on the basis of a genetic condition -- anymore than they should be able to do it on the basis of race or sexual orientation.

Keeping DNA on file, and taking the sample automatically without waiting for consent, seems like an unmitigated benefit to the child, as long the government doesn't adopt some bizarre eugenics program which would be harmful in general.

&ldquo;Many parents don't realize their baby's DNA is being stored in a government lab... "We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance."&rdquo;   