DETROIT (AP) — The state of Michigan has agreed to destroy more than 3 million dried bloodstains taken from babies and are kept in partial settlement in an ongoing lawsuit over consent and privacy in the digital age.
At the direction of the state, hospitals have routinely poked the heels of newborns to draw blood to check for more than 50 rare diseases† That practice, that is widespread in the US, is not challenged. Instead, the dispute is about remaining monsters.
A bloodstain from each child will be stored in Lansing, while five more will be sent to the Michigan Neonatal Biobank in Detroit for climate-controlled preservation.
Scientists can pay a fee to use the samples stored in Detroit for various research projects. Research with newborn bloodstains is also taking place in other states, especially California, New York and Minnesota, where they can be stored for decades.
Texas agreed to destroy millions of places in 2009 to settle a privacy lawsuit.
Since 2010, Michigan must have permission of parents to use spots for research. But attorney Philip Ellison argues that the program still violates constitutional protections against searches and repossessions and may not be fully understood by parents given forms amid the fog of childbirth.
Ellison claims that the consent form and accompanying brochure are vague, making no reference, for example, to the state collecting fees for bloodstains used by scientists.
“When moms and dads say, ‘Use them. I don’t care’ — that’s their business,” he told The Associated Press. “But the state isn’t giving them enough information to make an informed decision. . “Most people don’t remember signing anything. My wife had a cesarean section. 12 hours later she was still drowsy from all the drugs that had been injected into her from birth.”
Ashley Kanuszewski has admitted to signing forms to add bloodstains from two babies to the examination couch, but cannot recall receiving an information brochure at the hospital.
“I don’t like not knowing where or 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 in Lansing for the next 18 months and stop adding to that inventory, according to an agreement filed with federal court in Bay City. .
Those spots are 3.4 million, says spokeswoman Lynn Sutfin.
Sutfin declined to explain why the state agreed to get rid of them, citing the pending lawsuits. But in 2021, U.S. District Judge Thomas Ludington said the state had no specific parental consent to keep a single remaining bloodstain in Lansing.
The state has described them as places for parents to use in case future health problems arise.
The agreement to destroy those places does not end the matter. Still in the game: Millions under state control at Wayne State University in Detroit and available for research, including many prior to May 2010, when the health department began asking for parental consent.
In the coming months, Ludington will conduct a trial to try to determine how many bloodstains are actually needed for newborn disease screening, including to calibrate critical testing equipment.
The health department defends how it runs the program. It emphasizes that no spots will be saved for research unless: parents or guardians give permission. Spots can also be destroyed upon request, although the number of people taking that step each year is very small.
A code — not someone’s name — has been attached to bloodstains stored in Detroit, making the privacy risk during investigation “very low,” the state said.
“We only allow public health activities for the benefit of everyone, for the common good, to get better tests in the future, to discover more and so on,” said Sandip Shah, director of public health. state health lab, in an interview. with lawyers.
The Department publishes a list of approved research. For example, the state signed on last year that scientists used 3,600 bloodstains on newborns to determine exposure to so-called perennial chemicals known as PFAS in western Michigan. Other projects involved for-profit companies.
“How this court resolves the issues raised by plaintiffs could have a dramatic impact on the biomedical research environment, quenching scientific progress critical to protecting public health,” according to the Association of Public Health Laboratories.
In 2009, Texas agreed to destroy millions of newborn bloodstains kept without permission. Spots obtained since 2012 are now destroyed after two years unless Texan parents agree to keep them longer for research.
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