« Ind. Courts - Bills of interest to the judiciary that have passed one house | Main | Environment - Even more on "Crawford County residents question biomass power project" »

Saturday, February 06, 2010

Ind. Law - "The government has your baby's DNA "

That is the supermarket tabloid-type headline to this Feb. 4, 2010 CNN story by Elizabeth Cohen. Here are some quotes:

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."

According to the state of Minnesota's Web site, samples are kept so that tests can be repeated, if necessary, and in case the DNA is ever need to help parents identify a missing or deceased child. The samples are also used for medical research. * * *

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. (To find out how long your baby's DNA is stored, see this state-by-state list.)

According to the 2009 list, Indiana samples are kept for 23 years.

Without more information as to how and why they are kept, it is hard to know whether retention of these samples should be a matter of concern in Indiana. The Indiana law involved is IC 16-41-17, "Prevention and Treatment Programs: Examination of Infants for Phenylketonuria, Hypothyroidism, and Other Disorders."

Posted by Marcia Oddi on February 6, 2010 11:09 AM
Posted to Indiana Law