A bill that would allow the state health department to keep newborn blood samples and test results indefinitely cleared its final House committee today.
The House Civil Law Committee narrowly approved the legislation on a 9 to 8 vote.
Supporters say the legislation would help Minnesota rebuild its newborn screening archive. In January the health department was forced to destroy 1.1 million blood spot cards because the agency didn't have the authority to store them.
Among those who testified in favor of the bill was Korissa Olson, of Brooklyn Park, whose son has a rare metabolic disease that was identified early through newborn screening. Olson said long-term storage allows families to re-test the blood spot card if their child develops a disease months or years later.
"It really is going to be saving the lives of so many babies by that long-term storage," she said. "We need that. It's such a critical piece of information."
Opponents argued the bill violates a child's genetic privacy and is burdensome to families who must fill out paperwork to opt out of the program.
Twila Brase, president of the Citizen's Council for Health Freedom, told lawmakers that the bill puts the burden on parents to opt out if they object to the open-ended storage plan.
"I realize it was a close vote, but to think that the committee actually voted against protecting and preserving genetic privacy after we fought so hard to get it and now that it is so close to going away, it's a sad day," Brase said.
The bill will now be considered by the full House. A companion bill is scheduled for a hearing Thursday by the Senate Judiciary Committee.