Ethan A. Huff
Monday, April 26th, 2010
According to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center, all babies born in the United States are required to be screened for a host of genetic diseases. The government has mandated that all newborns be evaluated genetically to see whether or not they might be predisposed to developing a genetic disease and most parents are not informed about the tests.
The Browns from Mankato, Minnesota, are one such couple who was informed by their pediatrician that their daughter, Isabel, has a gene that allegedly heightens her risk of developing cystic fibrosis. Curious as to how the doctor obtained information about Isabel’s genes, the couple inquired of her about this, only to find out that Isabel had undergone gene tests when she was born without their consent.
Many states not only conduct gene tests on newborns but they store them indefinitely in government labs, which has caused an uproar among concerned parents.
“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,” explained Annie Brown, Isabel’s mother. Her concern is shared by millions of parents across the country, many of whom have filed lawsuits in their own states against the government.
In Minnesota, the explanation for why DNA is stored indefinitely is so analysts can perform repeat tests if need be. The state claims that in case a child ever goes missing or dies, DNA blueprints can be used for tracking and identification purposes. It also admits that samples are used for “medical research”.
Genetic testing on newborns first began in the 1960s to allegedly help detect serious conditions like retardation in order to save babies’ lives. According to records, many newborns’ lives were saved from such testing.
However, new tests were gradually added to the panel over the years. In some states, babies are screened for up to 54 different conditions. Their results are then stored in state labs for indefinite periods of time but, according to Therrell, parents need not worry about it.
“The states have in place very rigid controls on those specimens,” he explained. “If my children’s DNA were in one of these state labs, I wouldn’t be worried a bit.”
In reality, outside researchers often have access to the samples as well as the babies’ names to whom they belong. One study conducted in Minnesota found that over 20 scientific papers published in the U.S. since the year 2000 used newborn blood samples.
In many states, parents can request that their babies’ DNA be removed from labs and destroyed. Whether or not the state actually obeys is another story.
This article was posted: Monday, April 26, 2010 at 4:09 am