It happens when every baby is born in Michigan, blood sample is taken from the newborn.
But a judge has ruled the way the state of Michigan does this, is most likely unconstitutional.
Its a complicated legal ruling, but it may pave the way for changes in the newborn health screening process.
“They don’t tell the parents, they don’t explain it to the parents, they just do it,” says Saginaw County attorney Phil Ellison.
He is talking about the state of Michigan’s program where it takes a sample of blood from every newborn shortly after birth.
The blood is taken to test for diseases. He represents four parents and nine children, who claim the parents didn’t consent to have those blood samples stored and used in research.
A lawsuit was filed in 2018, claiming their constitutional rights were violated and recently a federal judge, in part, agreed.
“He ruled that the two parents of the two children who were born before May 1st 2010, had their constitutional substantive due process rights violated, basically your right to be a parent was violated when the government, being the state of Michigan, kept, retained without permission or consent the blood spots or blood samples of children that they had taken during the newborn screening process,” says Ellison.
The judge also ruled the process for blood taken from babies born after that May 2010 date, when consent forms for storage and research were in put in place, may also be unconstitutional, but wants to hear from the state on why blood samples are stored and exactly how many.
Millions of blood samples are stored in bio banks in Detroit and Lansing. Ellison says the health screening is important and should be done, but parents should be better informed about the whole process, including how the blood is stored and who has access to it.
“What starts out as a good, probably noble public policy idea of testing children early for diseases, now has turned into, we are going to keep the data, we are going to keep the blood samples , we are going to sell the blood samples, we are going to trade the blood samples, now law enforcement is accessing these samples, we have found out,” says Ellison.