Does the government have your baby's DNA?

Many parents in the United States are unaware that the federal government has been storing their children's DNA for years now.  The DNA is obtained in newborn screening tests to test for diseases such as Cystic Fibrosis, but then is stored indefinitely.  Some samples are used for scientific research, again without parents' knowledge or consent.

Minnesota health officials claim they keep the samples in case the tests need to be repeated and to help identify children in cases such as abduction or death.  For many parents, however, it's not worth the potential risks.

Mankato mother Annie Brown received news when her daughter was a month old that she had tested positive for a gene associated with Cystic Fibrosis, even though neither she nor her husband  had consented to any genetic screening and they knew nothing about it. 

While later tests proved that the infant does not have the disease, Brown worries that the positive test will be on her insurance record for life, something that could be held against her in the future.  She also worries that the government could someday screen for a gene associated with manic depression or schizophrenia, and that too would be on a permanent medical record that insurance companies and potential employers could access.

Parents in Minnesota and Texas have filed lawsuits and the issue is spurring debate around the country.

To view a PDF chart listing the conditions tested for in each state, click here.  To request that your child's sample be destroyed in Minnesota, fill out the Directive to Destroy Newborn Screening Test Results and/or Blood Sample.  Parents can request that the sample be destroyed and the record at the Minnesota Department of Health be destroyed, but if insurance paid for the test it will still be on record with the insurance company. 

In most states, however, parents have less recourse.  They can send a letter to their state department of health requesting their children's screening tests be destroyed, but it's up to each state to decide whether to comply.