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.
Wait, a heel prick is getting questioned but circumcision isn't?ReplyDelete
Am I missing something?
... if it is only linked by a number, never a name, how could someone insist that their records be destroyed?ReplyDelete
Who/where do I call in Virginia?ReplyDelete
I have good new, hopefully it' the truth. I spoke with a laboratory manager at the Division of Consolidated Laboratory Services (DCLS) ( the agency that handles newborn screening in virginia), and she assured me that as long as your child's test came back normal, Virginia destroys the sample when the child reaches 6 months. If there is a metabolic condition detected, they maintain the record for 10 years. In neither case do they release the sample for research.ReplyDelete
I just spoke with the Department of Health here in Utah and found that Utah destroys the sample after 90 days and there is no release of information to researchers for any kind of testing. If the results come back positive for cystic fibrosis, they will do DNA testing for the future benefit of the baby, parents and other siblings. You can also request that the samples be destroyed immediately after the results are in.ReplyDelete
I was given the chance to refuse/decline having my child's results stored by the state (we live in TX). In hind sight I'm glad I did since later (a couple years ago now) there was a huge thing about the tests not actually being just linked by a number and there was a possibility that others had the results...! I believe that the laws have been changed enough here that I am allowed to decline the test all together...ReplyDelete