The Minnesota Department of Health began destroying newborn blood samples this week to comply with a recent court ruling, officials said Tuesday.
Read the MDH's news release on News Cut.
Nine families had filed a lawsuit saying state law prohibited the department from keeping their babies' blood samples indefinitely as part of the state's Newborn Screening Program, and the Minnesota Supreme Court sided with the parents in a ruling in November.
But the issue is far from being settled. The health department made clear in a news release that it will seek changes to laws that govern the newborn screening program, including genetic information statutes.
The screening program collects blood spots on a card from all infants within 24 to 48 hours of their birth. The health department tests the blood spots for 53 different genetic or congenital disorders for the approximately 200 babies born in Minnesota each day.
The Minnesota Department of Health said the ruling will make it harder for officials to ensure the quality and accuracy of the program. For example, the health department used to go back to old blood tests to confirm the results of new ones, said Assistant Health Commissioner Aggie Leitheiser.
"To make sure that our testing is indeed accurate, you want to compare a new baby spot with a previously confirmed test," said Leitheiser, who oversees the department's Health Protection Bureau. "Currently under the court decision that's not something we can do."
Leitheiser said health officials will have to seek tests from other states in some cases.
Another way health officials use the screening program is to look back in time at emerging trends among newborns in a certain ethnic group or from a certain area of the state. That research was always done with informed parental consent, but now the data won't be available for later study because it's being destroyed, Leitheiser said.
"We won't be able to go back and say, 'hey, did something happen in this population or in this community, or, we now have a new test and would we have found this condition,'" she said.
Leitheiser said officials are still trying to determine the specific changes they will seek to improve the health department's ability to maintain a quality newborn screening program. One option is to ask parents for permission to keep the data rather than destroying it after the 71-day retention period, she said. But that would require more funding for hospitals to carry out the program.
"You'd want to make sure that if you're doing informed consent that the parents have all the information and are able to make an informed choice about things, and that takes more training," she said.
In the meantime, Minnesota Health Commissioner Dr. Edward Ehlinger said complying with the court ruling could have negative consequences on the program.
"For the first time in almost 20 years, we're going to begin destroying a valuable public health resource," he said in a news release.
The samples being destroyed are only those collected after the court ruling on Nov. 16. Since that ruling, two new class action lawsuits have been filed against the state by Minnesota parents, so older samples are being kept as evidence while those disputes are resolved.
Twila Brase, president of the Citizens' Council for Health Freedom, has supported the legal action and is now concerned that health officials will try to reverse parts of the Supreme Court ruling.
"We have a great genetic privacy law that requires informed written consent, and the fact that the health department wants to seek changes can only mean that they want to undo the consent requirements," she said. "That's truly troubling."