DETROIT (AP) — The state of Michigan has agreed to destroy more than 3 million dried blood spots collected from babies and stored in a partial settlement of an ongoing lawsuit over consent and privacy in the digital age.
Hospitals routinely stab newborns in their heels for blood tests, as directed by the state More than 50 rare diseases. This approach, namely Widespread in the U.S., unchallenged. Instead, the controversy lies in the remaining samples.
One blood spot from each child was stored in Lansing, and the other five were sent to the Michigan Newborn Biobank in Detroit for safekeeping in climate-controlled conditions.
Scientists can pay to use the samples stored in Detroit for various research projects. Studies of neonatal blood spots have also occurred in other states, notably California, New York and Minnesota, where they can be preserved for decades.
Texas agreed in 2009 to destroy millions of attractions to settle a privacy lawsuit.
Michigan since 2010 must be licensed Use spots from parents for research. But attorney Philip Ellison argues that the program still violates constitutional protections against search and seizure and that parents who receive the forms in the fog of childbirth may not fully understand.
Ellison claims the consent form and related manuals are vague, for example, making no mention of the state charging scientists for blood spots used by scientists.
“If mom and dad say, ‘Use them. I don’t care’ – that’s their business,” he told The Associated Press. “But the state doesn’t give them enough information to make an informed decision. …Most people don’t remember signing anything. My wife had a C-section. 12 hours later, she’s still groggy because of the labor All the drugs infused into her.”
Ashley Kanuszewski admitted she signed a form allowing blood spots from both babies to be added to the research bank, but did not recall receiving an information leaflet at the hospital.
“I don’t like not knowing where or what they’re using it for,” said Kanuszewski, one of four parents sued in 2018.
In May, after four years of litigation, the health department said it would destroy certain blood spots stored in Lansing over the next 18 months and stop adding to that stockpile, according to an agreement filed in federal court in Bay City.
The number of attractions is 3.4 million, spokeswoman Lynn Satfin said.
Sutfin declined to explain why the state agreed to get rid of them, citing ongoing litigation. But in 2021, U.S. District Judge Thomas Ludington said the state did not have special permission from parents to keep a remaining blood spot in Lansing.
The state describes them as a place parents can use in case of future health problems.
The agreement to destroy the sites did not end the case. Still at work: Detroit’s Wayne State University has millions of people under the state’s control available for research, including many before the health department began seeking parental consent in May 2010.
In the coming months, Ludington will conduct a trial to determine how many blood spots are really needed for newborn screening for disease, including issues such as calibrating key testing equipment.
The health department is defending the way it runs the program.It emphasizes that no spots are stored for research unless Parent or guardian gives permission. Spots can also be destroyed on request, although very few people take this step each year.
The state said the bloodspots stored in Detroit had a code — not someone’s name — attached to them, making the privacy risk “very low” during the study.
Sandip Shah, director of the state’s public health laboratory, said in an interview: “We only allow activities related to public health for the benefit of all, the public good, better testing in the future, discovery More and more.” with the lawyer.
department release list Approved Research. For example, the state last year approved the use of 3,600 newborn blood spots by scientists to determine exposure to a so-called permanent chemical known as PFAS in western Michigan. Other projects involve for-profit companies.
“How this court addresses the issues raised by plaintiffs could dramatically impact the biomedical research environment, potentially hindering scientific progress that is critical to protecting public health,” said the Association of Public Health Laboratories.
In 2009, Texas agreed to destroy millions of newborn blood spots that were kept without consent.Attractions acquired since 2012 are now Destroyed after two years Unless Texas parents agree to store them longer for research.
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