Does the government have your child's DNA? Updated.

**It seems like the practice of saving newborn screening cards by state governments is getting more and more attention.  This entry is becoming very popular, so I decided to update it a bit with a link to a document that lists which states are saving newborn cards and for how long.**

HealthofChildren.com

Newborn genetic screening is done at State health department laboratories. Hospitals send newborn blood on a special card to the health department. The test results are then sent to the infant’s physician. Some States—perhaps all States—register newborn test results in a state database....

Public health agencies not only collect genetic testing data, they collect DNA—the baby’s blood. Hospitals are required to send more blood to the agency than is needed for the testing. This over-collection provides health officials with a rich supply of citizen DNA that some states are already using for research without consent....

Twenty states store newborn blood samples from one to 23 years.  With 4 million babies born each year and at least ten states retaining newborn blood indefinitely, the repository of infant DNA is large and growing. The baby’s DNA is considered state government property. According to the book, The Stored Tissue Issue, there are currently “more than 13.5 million newborn screening cards in storage and new cards being stored at a rate of 10,000 - 500,000 cards a year, depending on state populations.”  Most parents have no idea this is happening.

I believe the issue here is not the newborn screening.  It is the fact that parents are not being properly informed about what is being done with their child's DNA.  States do allow parents to "opt out", but that means that their child does not get the benefit of testing.

Parents need to be given the option of having their child's sample be destroyed after the testing is done.  Any storage or use of their child's DNA for research should be an "opt in" situation where informed consent is given by the parents for any use outside the scope of the initial genetic testing.

Beyond the parental consent issue, the Citizens' Council on Health Care is concerned that these databases will be used to bring back state-sponsored eugenics:

Today’s newborn genetic screening advocates envision a much more comprehensive program in the future. The Heartland Regional Genetics and Newborn Screening Collaborative looks forward to every infant being screened for at least 200 different conditions. Others predict the full genomic sequencing of each child at birth. Søren Holm writes in the book, A Companion to Genethics:

Newborn screening, which is usually mandated by governments to identify and treat diseases of infancy, has been limited, for ethical reasons, to disorders where early diagnosis and treatment would benefit the newborn, but with multiplex tests the focus of testing may be expanding to include some nontreatable disorders. Kitcher (1996) foresees the day when parents will receive an entire ‘genetic report card” at the child’s birth predicting lifetime health.”

Such predictive capability in the hands of government officials and others is not without significant eugenic risk.

Unfortunately, the Citizens' Council on Health Care is correct.  Especially in a possible future state sponsored health-care system where rationing health care resources is a necessity, your child's genetic profile maybe used against them.

The Citizens' Council on Health Care concludes that parents need to be given choices on what conditions their children are tested for.  They call for the destruction of any existing State newborn DNA repositories and call for informed consent from parents for further storage and testing of newborn DNA.

This chart complied by the Citizens' Council on Health Care lists a State by State government newborn blood & baby DNA retention practices. Going back to 2001, it lists whether or not your state stores your child's blood from a newborn screening card, and for how long.  And remember, the blood and DNA on those cards are considered the property of the state.

If you have children 8 years or younger, I would recommend finding out if your child's blood is being stored by your state.  Two of my children will have their newborn screening cards stored until they are adults.

If the information on this chart bothers you, I suggest contacting your state representatives and let them know.  As parents we should be fully informed about what happens to our children's DNA once it leaves their bodies.  Parents need to be given the option of having their child's sample be destroyed after the testing is done.  Any storage or use of their child's DNA for research should be an "opt in" situation where informed consent is given by the parents for any use outside the scope of the initial genetic testing.