posted with permission from KIMA television
It's one of the first tests on a newborn. A heel prick to check blood for any problems missed during pregnancy. But that simple test is now facing an ethics attack.
Once the blood spots are tested, the state hangs onto them for years. Why is this scary? Because it gives researchers permanent access to your child's DNA, without your permission.
It's not a new parent's best memory. A heel prick, a blood test and a crying baby. But it helps doctors find problems otherwise undetectable.
What's often left out of that procedure is that the state stores your baby's blood for 21 years.
"I didn't know that that existed. I had no idea they kept it that long," said mother of three, Jennifer Carter.
Moms of newborns are often given a pamphlet to give them more information about the heel prick test and about that blood spot and how long its kept. But it's not often they have time to read it.
Carter said, "I didn't read anymore about it. No. Because I was so busy paying attention to the baby that I didn't read the details."
Scientists use the left over samples for all kinds of research, including which genes trigger childhood cancers.
"Most of the research this is done for is advocated for by parents with children with genetic conditions," said Kiana Siefkas, Genetic Counselor at Memorial Hospital.
But parents are rarely asked to consent to this research. And most never know it's even going on. That's been raising privacy concerns.
Siefkas said, "The blood sample is basically linked by a number. Researchers would never get that person's name."
The question is, should parents have more say in how that blood is used?
And is there a better way to inform them about the test and ALL it encompasses?
"I think it can be talked about a little more. But that's hard to say. How much do you want to talk and how much do you want to sleep as a new mom?" said Siefkas.
New national guidelines are in the works - hoping to prevent this simple process of drawing blood from drawing anymore criticism.
In some studies a parent's permission is needed. In Seattle right now, researchers are working on a diabetic study. And new parents are being asked before their child's DNA is used.
Parents can also call and request that the sample is destroyed after the newborn tests are run. And once you turn 18 you can also request it yourself.