Parents in Michigan have filed a lawsuit against the state, alleging that it did not obtain their consent to draw or store their newborn children’s blood to use in medical research.
Philip Ellison filed the federal lawsuit on behalf of the group of parents, stating that Michigan draws infants’ blood – an act that is unconstitutional, Fox News reports. The same lawsuit alleges that there are no protections in place to prevent police officers and other people from accessing information that can be gathered from such blood samples.
Ellison, lawyer from Saginaw County, said,
Essentially, the state has stolen consent from parents.
This lawsuit is not trying to hinder newborn testing, but it does aim to inform and educate parents on their right to decide and consent to such actions. According to the Michigan Department of Health and Human Services, the blood of over five million people is in storage.
Michigan began drawing blood from newborns in the 1960s to test for various diseases. The initial testing list had six conditions, and has now grown to over 50 today. The state started storing the samples in the mid-1980s.
Policymakers changed Michigan’s Public Health Code in 2000 to allow newborn screening blood in health research. A program called BioTrust was later created to oversee the blood and how it is used in research.
People born between 1987 and 2010 can opt not to participate in the blood research and storage projects, the health department said. The parents of children born after May 2010 can decline to sign over consent, and blood spots will be stored until a parent requests for the state to destroy them.
Natasha Bonhomme, who works for the nonprofit Genetic Alliance, said, “It really goes counter to what other parents might want and the importance of them having a say in the process to eliminate samples from the bio bank.”