The Minnesota Department of Health can no longer store blood samples indefinitely from its newborn screening program or make them available to researchers without parental consent.
In a ruling released Wednesday, the Minnesota Supreme Court allowed the screening program to continue, but sided with families who questioned the Health Department's authority to retain and use the blood samples.
Nine families sued the Department over the screening program.
The court's decision restores the privacy rights of families," said Twila Brase, president of the Citizens' Council for Health Freedom, which supported the families' legal claims.
"For those that want to be part of research, there's a consent process. We're not saying there can't be any research. It doesn't look like the decision says there can't be any research," Brase said. "But they have to get the informed, written consent of parents."
In a written statement, the Health Department is reviewing the court's decision to determine any potential implications of the ruling on the ongoing operations of the newborn screening program.
"We are very pleased with the result because we have been working on this issue since we discovered it eight years ago, and we've been trying to get privacy and parent consent right," Brase said. "This is a very good decision."