MID-MICHIGAN (WJRT) (2/15/2018) - Childbirth is one of the most exciting times of a parent's life and they want to feel in control.
In Michigan, there is one part of the birth process that parents don't get any control over. About 24 hours after birth, physicians are required to take blood samples -- most commonly from the baby's heel.
Dots of blood go onto a card, from which they are tested for more than 50 chronic diseases that require early treatment, including heart problems, sickle cell anemia and cystic fibrosis.
The mandatory blood testing law has been on the books in Michigan since the 1960s. The state says each year more than 250 Michigan babies are found to have a disorder detected by newborn bloodspot screening.
However, some families claim the blood samples are taken illegally without parents' consent, sparking a federal lawsuit.
Mary Kay Sanders, a registered nurse in the obstetrics, labor and delivery department at Covenant HealthCare in Saginaw, believes strongly in the need for the tests.
"I believe it is a very important test," she said. "It's necessary if you are the kind of parent if you wants to know the ins and outs of your child, genetic-wise and so forth."
Phil Ellison got to watch the birth of his son Patton at Covenant HealthCare in September.
"A nurse presented me with a form and said, 'We need you to sign this particular form regarding the blood we took from your son,'" he said.
The standardized form asks if the parents want to allow their newborns' blood to be used for research. Ellison said he didn't want the hospital to take the blood in the first place.
"She said, 'No, the state of Michigan is the one that has the blood,' and I said, 'Wow, wow, how did the state of Michigan get my son's blood?'" he said.
That question prompted a federal lawsuit filed by the parents of nine children. Ellison is not a plaintiff but is the parents' attorney.
The parents and Ellison say the state should not be allowed to take newborns blood without consent.
"The state has stolen blood and then comes back and says we would like to donate the stolen blood for research, and by the way, even if you say yes or say no, we are going to keep the blood at a warehouse in Detroit," he said.
That warehouse is near Wayne State University called the Michigan Neonatal Biobank, a nonprofit program run by the Michigan Department of Health and Human Services.
Millions of bloodspot forms from people born since 1984 are kept for research. Even if a family doesn't want their newborn's blood used for research, the state will store the dried blood spots unless the family requests they be destroyed.
Sanders, the nurse, is glad the state kept her son's blood spots. Corey Sanders collapsed in the Cass City High School cafeteria in 2009.
"He passed away. It was instant and we did not have answers," she said. "The doctor just said he had sudden cardiac death."
Sanders worried about her four other children and her grandchildren after Corey's death.
"I have two grand children as well, so, my concern was, if there was something genetically that wasn't tested back in 1991 when he was born, if there was a way that those blood spots could be used to look and see if there was anything genetic that we could watch out for, predisposition with our other children," she said.
One of Corey Sanders' blood spots has been designated back to the family and is now being tested to see if his siblings or their children, could be alerted to a potential health problem.
Ellison said a story like that shows how the program can help a family, but he is concerned with privacy issues. Even though the Biobank claims law enforcement or insurance companies don't have access to the blood spots, Ellison says a Freedom of Information Act request he filed proves otherwise.
"Law enforcement has accessed these blood banks 22 times as part of their investigations," he said.
He also claims the Michigan Neonatal Biobank sold samples to researchers and state universities. He worries that one day insurance companies can get a hold of the blood data and deny coverage for pre-existing conditions.
Officials with the Michigan Neonatal BioBank did not return messages seeking comment.
The lawsuit is filed against the state, the Biobank and individuals with both entities. Ellison claims the taking of the blood by the state violates the Fourth Amendment, the protection against illegal search and seizure.
The families would like to see their blood spots destroyed or have the state retroactively ask the parents for their consent to take the blood.
"Consent is about control," Ellison said. "If you have to get permission from somebody, that means you have to justify what you are doing. Right now, the state doesn't have to justify anything it is doing to the private blood samples of Michigan citizens, and citizens being young babies."
Sanders understands why some people might have concerns about privacy, but believes everyone should have their newborns blood tested, and allow it to be used for research.
"Even though it's personal for me, it's a very personal decision for them, and so, if they were to see this news story -- and hey, I remember declining that -- all they have to do is call or go online to the Biotrust for research, and they can actually look that up and contact them and reverse that decision before the child's 18th birthday," Sanders said.