DETROIT (AP) – The state of Michigan has agreed to destroy more than 3 million dried baby spots taken and stored, a partial settlement to an ongoing lawsuit for consent and privacy in the digital age.
Under state guidance, hospitals pierce newborns’ heels to draw blood to test for more than 50 rare diseases. This practice, which is widespread in the US, is undisputed. Rather, the controversy is over surviving specimens.
One bloodstain from each child is stored in Lansing, while another five are sent to the Neonatal Biobank in Michigan for custody in climate-controlled conditions.
Scientists can pay a fee to use the samples stored in Detroit for various research projects. Newborn blood smear research is being done in other states, particularly California, New York and Minnesota, where it can be stored for decades.
Texas in 2009 agreed to demolish millions of sites to settle a privacy lawsuit.
As of 2010, Michigan must have parental permission to use spots for research. But attorney Philip Ellison argues that the program continues to violate constitutional protections against investigations and seizures and may not be fully understood by parents appearing in print in the fog of childbirth.
Ellison claims that the consent form and a leaflet are vague, without mentioning, for example, the state that charges fees for bloodstains used by scientists.
“If moms and dads say, ‘Use them. “I do not care, ” this is their job, ” he told the Associated Press. “But the state does not give them enough information to make an informed decision. … Most people do not remember signing something. My wife had a caesarean section. “She was still boring 12 hours later than all the drugs that were given to her after the birth.”
Ashley Kanuszewski acknowledged that she had signed leaflets allowing bloodstains from two babies to be added to the research bank, but did not recall receiving a leaflet at the hospital.
“I do not like not knowing where or for what purpose they are using it,” said Kanuszewski, one of four parents who sued in 2018.
In May, after four years of litigation, the health department said it would destroy some bloodstains stored in Lansing for the next 18 months and stop adding to that stock, according to an agreement filed in federal court in Bay City.
These points amount to 3.4 million, said spokeswoman Lynn Sutfin.
Satfin declined to explain why the state agreed to get rid of them, citing the ongoing legal dispute. But in 2021, U.S. District Judge Thomas Landington said the state did not have specific permission from parents to maintain a single spot of blood in Lansing.
The state has designated them as points that could be used by parents in the event of future health problems.
The agreement to destroy these points does not end the case. Still at play: Millions under state control at Wayne State University in Detroit and available for research, including many that preceded May 2010 when the health department began seeking parental consent.
In the coming months, Ludington will conduct a test to try to determine how many bloodstains are really needed for screening for neonatal disease, including the calibration of critical testing equipment, among other issues.
The Ministry of Health is defending the way the program is run. He points out that no search points are stored unless the parents or guardians give permission. Points can also be destroyed on request, although the number of people taking this step each year is very small.
A password – not someone’s name – is linked to bloodstains stored in Detroit, making the risk of privacy during the search “very low,” the state said.
“We only allow public health activities for the benefit of all, for the public good, for better trials in the future, for more to be discovered, and so on,” said Sandip Shah, director of the state public health lab, in an interview. with lawyers.
The department publishes a list of approved investigations. The state last year, for example, signed scientists using 3,600 neonatal bloodstains to determine exposure to so-called chemicals known as PFAS in western Michigan. Other projects involved for-profit companies.
“The way in which this court is resolving the issues raised by the plaintiffs could dramatically affect the biomedical research environment, potentially choking out scientific progress that is critical to the protection of public health,” said the Association of Public Health Laboratories. .
In 2009, Texas agreed to destroy millions of bloodstains in newborns that were kept without consent. Stains taken since 2012 are now being destroyed after two years, unless Texas parents agree to save them for further research.
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