Shortly after your baby is born, a nurse will prick his or her little heel and press it against a card four or five times, collecting blood spots that are then tested for a number of metabolic and genetic disorders that need to be treated at birth. You probably won't even see it happening, and more than likely will not be asked to give consent other than the blanket consent form you sign at the hospital.
The testing usually requires only a small amount of the blood spots be used. So what happens to your baby's blood after that?
In most states, the blood is stored and used for research. Most likely, research you never agreed to and won't ever know about.
It sounds horrible, right?
Whether or not it actually is horrible depends on what your state does with the blood spots, and how you feel about science.
Most states have pretty ironclad privacy rules regarding the blood spots. When I did a story for a local publication about how Michigan is using its collection of blood spots as a resource for researchers nationwide, I discovered that the spots are separated after the testing is done and given a number; some are kept at the state health department and can be identified if a health concern comes up over the years.
The ones that go to researchers are stripped of their first number and assigned a second when they come to the bio-bank facility, and then get yet a third when sent out to researchers. Only three people know the last two numbers, and no name is ever used. They are able to break down the cards holding the blood spots by county and year of birth and they are linked to databases of cancer, death, and birth defects.
If you want to know more about where your baby's blood goes after the screening, or what tests are done, contact your state's health department, or look at this GAO report. I know I was pretty unsettled knowing people were doing research on my children's blood without my knowledge or consent until I met the people in charge of keeping the spots anonymous and regulating the types of research that could be done, some of which will help other mothers' babies someday. They take their work very seriously and consider privacy paramount; the director wouldn't even let the boxes where the cards are stored be photographed in a way that would allow their numbers to be seen.
But I still wish I'd been asked first.
Would you allow your baby's blood to be used for research?
Image via Horia Varlan/Flickr