In battle over baby’s blood, Michigan case could have implications in New Jersey

Lawyer Philip Ellison’s mission to stop a practice he has characterized as the government cracking down on new parents began just hours after his son entered the world in the fall of 2017.

As the nurses performed various routine health checks on the newborn, one of them approached Ellison with a form, demanding a signature for the blood tests.

“I said, ‘You’re already testing his blood.’ And they said, ‘Well, no, no, no, that’s not the blood for us. That’s the blood that we’re shipping to the state of Michigan,'” Ellison said. “So the lawyer civil rights inside me took over and said, ‘What the hell are you talking about?!'”

Thus began a five-year crusade by the Michigan attorney, who became the top national champion of parental rights in a battle against the “bloodstains.”

Hospitals in every state routinely prick the heels of newborn babies to draw blood to screen for disease, keeping dried samples — or stains — to store for varying lengths of time.

Ellison doesn’t oppose health screenings, but rather the common practice of storing spots — sometimes forever — for use in medical research, criminal investigations, and all sorts of things parents never consented to.

He sued in Michigan, both to have his son’s samples destroyed and to demand state and health authorities brief new parents on labor, obtain informed consent and create more oversight and transparency around bloodstains.

His cases remain pending in state and federal courts and will likely influence new challenges that have arisen in other states, including New Jersey, where the New Jersey Monitor and Office of the Public Defender have for follow-up to force the state to reveal details of how his newborn bloodstains are used.

“If you had told me when I started law school almost 15 years ago that I would be knee-deep in infant blood, I would probably have thought you were crazy,” said he told the New Jersey Monitor. “But of course, here we are.”

Constitutional rights and crawling

For Ellison, testing and storing newborn bloodstains violates two constitutional rights – a person’s rights to privacy and bodily autonomy.

“You have the constitutional right to keep the government out of your body and out of the information that’s in your body,” Ellison said. “And the government does not interfere with your right to be able to dictate what happens to you.”

But many states are violating those rights, Ellison said, because disease testing is only the primary way they use babies’ dried blood.

Michigan also uses the spots for biomedical research, has sold them to for-profit companies for research, and uses them for the identification of crime victims, Ellison said.

In Texas, the state donated bloodstains to the federal government to help create a DNA database to solve cold cases and identify missing persons. In Minnesota, the researchers used them to look for emerging trends in newborns by ethnic group and region.

And in New Jersey, the Public Defender’s Office recently discovered that state police used the bloodstain of a child, now 9, to link his father to a 1996 sexual assault instead of proving probable cause and getting a warrant, like the requires the law, to directly obtain the DNA of the man.

Such use beyond the original purpose of securing samples is a concept that Ellison calls “creeping”.

“Bloodstains that were originally taken to test newborns for diseases are now used for medical research, automatic tests to calibrate machines, criminal investigations and victim identification, and things like moms and dads were never told,” he said.

States universally fail to notify parents of all the ways bloodstains could be used, or even stored at all, Ellison said. They also give parents little or no option to opt out – either from the screening itself or from the storage of spots and subsequent uses, he added.

“They’re asking moms and dads for consent 12 hours after a child is born, when they’re in the fog of the birthing war,” he said. “I’m a civil rights lawyer and it raised some red flags for me, but most people would never think about it again.”

In New Jersey, a handout given to new parents tells them that the blood test is required by law, with no information to opt out of the blood test itself or the storage of the stains afterwards. The sheet also doesn’t say that New Jersey is keeping samples for 23 years, or what they might be used for during that time.

A study 2019 by researchers at the University of Utah, states generally store and use bloodstains without explicit parental permission.

“The choice should be up to mom and dad, not some government bureaucrat,” Ellison said.

Bloodstains that were originally taken to test for newborn diseases are now used for medical research, automatic tests to calibrate machines, criminal investigations and victim identification, and things whose moms and dads were never told.

Given the government’s propensity to be wrong, Ellison added, the implications of storing and using the bloodstains could be dire, he added.

“If the government miscategorizes your bloodstain – and then uses that bloodstain to say you’ve committed a crime, there’s no oversight in place when the government makes such a mistake.” he declared.

Necessary changes

There are some easy answers here, Ellison says.

If states require blood tests on newborns, parents should be given the option to do so privately, he said.

“Why does the government have to do this?” he said. “The inherent threat of government abuse disappears if I hire a private lab.”

Policymakers could act to ensure some national uniformity in how bloodstains are stored and used, he added. It makes no sense, for example, for Alabama to hold spots for three months while states like California and Michigan hold them indefinitely, he said.

And before any use of blood drops after a newborn health screening, parents must be fully informed and their consent must be sought, Ellison said.

“The presumption should always be destruction, not use, until consent is actually obtained. But what a lot of these states are doing now is the opposite,” he said. “There is a parade of horrible people who can come out of it. But before governments decide what to do with our own private medical data, they must first come and ask – and until they ask, they can’t just do it.

Ellison’s son Patton, now 4, has no idea he’s in the eye of a constitutional storm.

“All we talk about these days is Minecraft,” Ellison joked.

He is still unsure whether his son’s samples have been destroyed, as he has repeatedly requested. Her state case, which includes her son’s samples, has been put on hold pending the outcome of her federal case.

But Ellison has won a few victories since the first lawsuit he filed in February 2018. Most recently, authorities in Michigan last month agreed to destroy more than 3 million bloodstains in a partial settlement of his federal case.

It’s a mission that Ellison undertook without pay.

“Honestly, it’s okay,” he said. “I think it’s so important.”

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