Michigan to destroy bloodstains in fight for consent

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DETROIT (TSWT) — The state of Michigan has agreed to destroy more than 3 million dried blood spots taken from babies and stored, a partial settlement in an ongoing lawsuit over consent and privacy in the digital age.

Under state direction, hospitals routinely pricked newborns’ heels to draw blood to check for more than 50 rare diseases. This practice, widespread in the United States, is not disputed. Rather, the dispute is over the remaining samples.

One bloodstain from each child is stored at Lansing while five more are sent to the Michigan Neonatal Biobank in Detroit for preservation under climate-controlled conditions.

Scientists can pay fees to use samples stored in Detroit for various research projects. Newborn bloodstain research also occurs in other states, particularly California, New York and Minnesota, where it can be stored for decades.

Texas in 2009 agreed to destroy millions of commercials to settle a privacy lawsuit.

Since 2010, Michigan must have parental permission to use spots for research purposes. But attorney Philip Ellison argues the program still violates constitutional protections against search and seizure and may not be fully understood by parents who are presented with forms amid the fog of childbirth.

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Ellison says the consent form and a related pamphlet are vague, making no reference, for example, to the state collecting fees for bloodstains used by scientists.

“If moms and dads say, ‘Use them. I don’t care’ – that’s their business,” he told The The Switzerland Times. information to make an informed decision…. Most people have no memory of signing anything. My wife had a C-section. She was still groggy 12 hours later from all the drugs that were injected into her after giving birth.”

Ashley Kanuszewski admitted signing forms to add bloodstains from two babies to the research bank, but does not recall receiving an informational pamphlet at the hospital.

“I don’t like not knowing where and what they’re using it for,” said Kanuszewski, one of four parents who filed a lawsuit in 2018.

In May, after four years of litigation, the health department said it would destroy certain bloodstains stored at Lansing over the next 18 months and stop adding to that inventory, according to an agreement filed in federal court. of Bay City.

Those spots number 3.4 million, spokeswoman Lynn Sutfin said.

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Sutfin declined to explain why the state agreed to get rid of it, citing ongoing litigation. But in 2021, U.S. District Judge Thomas Ludington said the state had no specific parental permission to keep a single remaining bloodstain in Lansing.

The state described them as spots that could be used by parents in the event of future health problems.

The agreement to destroy these stains does not end the case. Still in play: Millions that are under state control at Wayne State University in Detroit and available for research, including many that predated May 2010 when the health department began asking for parental consent.

In the coming months, Ludington will host a trial to try to determine how many blood spots are actually needed for screening for neonatal diseases, including calibrating critical testing equipment, among other issues.

The Department of Health defends the way it runs the program. It emphasizes that no places are stored for research unless parents or guardians give permission. Spots can also be destroyed on demand, although the number of people who take this step each year is very low.

A code — not someone’s name — is attached to bloodstains that are stored in Detroit, making the risk to privacy during the search “very low,” the state said.

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“We only allow activities that concern public health for the benefit of all, for the public good, to get better tests in the future, to find out more, etc.,” said Sandip Shah, director of the state public health laboratory, in an interview. with lawyers.

The department publishes a list of approved research. Last year, for example, the state allowed scientists to use 3,600 bloodstains from newborns to determine exposure to so-called eternal chemicals known as PFAS in western Michigan. Other projects have involved for-profit companies.

“How this tribunal resolves the issues presented by plaintiffs could have a significant impact on the environment for biomedical research, potentially crippling scientific advances essential to protecting public health,” the Association of Laboratories of Biomedical Sciences said in a statement. public health.

In 2009, Texas agreed to destroy millions of newborn bloodstains stored without consent. Spots obtained since 2012 are now destroyed after two years, unless parents in Texas agree to keep them longer for research.

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Follow Ed White on Twitter: http://twitter.com/edwritez

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