If you were born in Michigan in July 1984 or later, you may be among more than five million people whose blood is being held by the state of Michigan, some of which may be used in medical research.

If you didn't know, blame your parents for not asking more questions.

If you want your blood to be excluded from research or destroyed, ask the state.

Or, like a group of parents who say the state did not obtain proper consent for their newborns' blood to be drawn or stored, you could sue the state of Michigan.

A federal lawsuit, filed by Saginaw County Attorney Philip Ellison on behalf of a group of Michigan parents, argues that the practice is unconstitutional and there are no protections in place to stop police or others from accessing the information that can be derived from stored blood samples.

The lawsuit does not aim to stop newborn testing, Ellison said, but to give control back to parents and guardians.

"Essentially, the state has stolen consent from parents," Ellison said.

He learned about Michigan's process of drawing infant blood works when he became a father in September, and said he's fighting for the rights of his newborn son and others to make their own choice about their blood.

The lawsuit asks for a jury to hear the case, to award damages, and for the court to find the practice unconstitutional.

Blood of 5 million

The blood of more than five million people is being stored, the Michigan Department of Health and Human Services (MDHHS) told MLive in March. That's half of Michigan's total population of just under 10 million.

MDHHS declined to provide more specific numbers or answer other questions because of the ongoing litigation, spokeswoman Lynn Suftin said. The department provided publicly available information to MLive about the program.

Michigan has drawn newborn blood for decades, beginning in the 1960s, to test babies for ailments on a list that began with six maladies and has grown to more than 50 conditions today, MDHHS said.

"I think it's a laudable goal," Ellison said.

But the program has evolved to become what it is today and with changes in technology, and blood can tell a lot about a person now compared to when the program began, he said.

In the mid 1980s, the state began storing blood samples for up to 100 years, MDHHS said, and in 2000, the Michigan Legislature amended the Public Health Code to allow use of newborn screening blood spots in health research, later developing the BioTrust, a program with an advisory board to oversee the stored blood spots and their use in health research.

The stored blood samples or spots are "de-identified," MDHHS said. They may be used by health researchers under a waiver of informed consent that can be granted by the MDHHS Institutional Review Board, made up of mostly MDHHS employees, which exists to make decisions about human subject research.

People born between 1987 and 2010 can opt out of blood research and storage by contacting the state to ask that samples not be used for research or be destroyed, or otherwise their blood will remain in private storage indefinitely. Parents may also contact the state to make the request, MDHHS said.

Parents of children born after May 2010 can opt out of the research portion by declining to sign over their consent, according to the state. Blood spots will continue to be stored unless a parent asks the state to destroy them.

Ellison argues in the suit, based on information from the state, that Michigan has processed 22 requests from law enforcement agencies asking for blood samples/spots or information derived from them.

The state emphasizes that privacy is being protected during the blood draw and storage process.

Fighting for Patton

Ellison said he first learned of the state's practice when he became a father and he and his wife, Katherine Ellison, welcomed Patton Justus Ellison into the world last September.

Patton was born early, Ellison said, among a whirlwind of excitement, uncertainty and anxiety.

The Hemlock attorney said he was surprised the next day when a healthcare professional at Saginaw's Covenant HealthCare hospital told him the newborn's blood sample was sent to the state of Michigan, and more surprised when he found out it would be kept in storage.

No one, not Ellison or his wife, a professor and director at Saginaw Valley State University, signed over consent before the blood was drawn, Ellison said.

The nurse handed Ellison a form that asked if the state could keep the extra blood. He signed and checked an option saying he did not wish to donate, Ellison said, though he believes the form indicates the state would keep the blood regardless.

"They didn't ask you if they could take the blood or test the blood. They only ask, after the fact, can we keep for research purposes? And if you say no, we're going to keep it anyway," Ellison said.

"My fears were realized, which is that the state of Michigan is keeping everyone's blood," he said.

He calls it "false consent."

Lynnette Wiegand, 30, of Saginaw Township, has four children ages 1 to 6. She is a plaintiff in the case after she learned about the state's practice to store infant blood from Ellison.

"I thought, once they did testing, the blood was discarded," she said.

She said she believes the state should be more transparent and hospital staff should be required to tell parents what they are signing, with clear and separate questions on a form asking parents to sign consent for the blood to be drawn, for it to be used in medical research, and for it to be stored.

"What else do they use the blood for?" she said. "Why do they have permission to donate or sell it to another third party?"

She wouldn't have signed the form at the hospital if she knew the blood was going to be stored, she said, and believes a person should be notified when they turn 18 if their blood is being stored.

"It's kind of like the typical government in my opinion, they always hide everything, they don't want anybody knowing what's going on," she said.

Natasha Bonhomme, chief strategy officer at the Washington D.C. based nonprofit Genetic Alliance, which promotes the idea that access to quality genetic services is critical to comprehensive healthcare, said she believes citizen input is important on issues like Michigan's blood bank, but there are different ways to go about it rather than filing a lawsuit.

Lawsuits challenging the storage of blood in other states have led to the destruction of millions of blood samples. "It really goes counter to what other parents might want and the importance of them having a say in the process to eliminate samples from the bio bank," she said.

The newborn screening takes place without consent, she said, as part of public health, in every state.

"Typically, it's put under the umbrella of you do whatever it takes to keep newborns safe," she said.

She believes it's important to separate the issue of consent for blood draw and the issue of consent for storage and/or testing.

It falls to MDHHS to provide information on their processes to help citizens be informed, she said, and criticism of the practice, like the lawsuit, could mean the state has to make a change or do a better job of informing people.

Destroying baby's blood

After returning home from the hospital, Philip Ellison wrote a letter to ask the state to destroy Patton's blood. The state argues in the lawsuit that it destroyed the blood after Ellison requested them to.

A separate lawsuit, filed by Ellison's wife in the Michigan Court of Claims, argues that the state should be required to release more details about the program, after MDHHS responded to her FOIA requests.

According to the lawsuit, the state responded to FOIA request for records of all requests from law enforcement seeking blood samples or spots or information derived from them by sending a document that states, "Twenty-two forensics requests processed."

MDHHS's response in the Court of Claims states that some of the information Ellison requested about forensic requests of the blood spots "is confidential; thus, not subject to public disclosure."

MDHHS responded to a FOIA request from MLive seeking the same information about requests from law enforcement agencies, denying the request, saying the records are exempt under the public health code and medical research act, and also because they would contain information of a personal nature that public disclosure would constitute "a clearly unwarranted invasion of an individual's privacy," citing the Health Insurance Portability and Accountability Act (HIPAA).

MDHHS admits it initially retained the newborn Ellison's blood spots, according to an MDHHS court filing, but denies it was done without the knowledge of his parents.

The state has not yet filed a response to the federal complaint.

If the information found within blood spots is not being misused now, concern remains about what the government could do in the future because of the system that's in place, Ellison said.

He disagrees with the state's assertion that privacy is being protected, he said, but if that is the case, it may not be in the future because laws can change.

Ellison and his clients are not against the notion of testing newborn blood for health reasons, he said, but believe citizens should be informed and make the decision themselves. Giving consent is about having control, he said, and the state has removed the person's right to decide.

He created stolenblood.com to spread the word about the lawsuit.

"If you're willing to let the state have your blood and take the risk of what the future might bring, that's your choice," he said. "But it's also your choice to say I don't want to participate in that."