Created: 02/27/2014 7:21 PM KAALtv.com
(ABC 6 News) -- New legislation authored by area Representative Kim Norton would allow the Minnesota Department of Health to keep infant blood samples for research. This comes after MDH was ordered to throw out roughly one million samples as part of a lawsuit by parents who claim they didn’t give consent.
It first came as a lawsuit by parents who were upset that their kids information was being stored. "As far as whether these things should be used as research or not is one thing we can debate another time, but here clearly the law says they were not supposed to do this without consent, which wasn't given here," said Austin father and plaintiff in the case, Marty Helle back in January.
Researchers were asked to throw out years of data in light of this "It is a terrible thing that happened yesterday..." That's how Dr. Robert Jacobson, President of the Minnesota Chapter of the American Academy of Pediatrics first reacted to this. "Often by this test we can change something in the patients diet, or give them medication, or begin a therapy that would prevent disability or death for the rest of their lives, saving the state money, preventing a lot of hardship on the family and the child, and what we're doing is dismantling the program," Dr. Jacobson told us in January.
He's now working with lawmakers on a new bill, to reverse the law created in 2012 requiring them to toss out blood samples after 71 days. We called him Thursday to talk about the new legislation, here's what he had to say this time. "We are actually reversing what is a great travesty," said Dr. Jacobson.
He says it's heartbreaking that Minnesota went from being a leader, to starting from the bottom again. "We were the pinnacle, we were at the top, we were the leader in not just the United States, but the world," said Dr. Jacobson. He says right now there's only one way to bounce back. "Once this legislation is in place it would actually protect the ongoing collection of data," he said.
Dr. Jacobson says it can take up to 6 months to confirm a diagnosis and being forced to toss out samples after 71 days destroys that opportunity. He says these screenings have saved more than 5,000 children.