The Associated Press
The Mankato Free Press
---- — MINNEAPOLIS — Legislators will consider this week whether the Minnesota Department of Health should have unlimited time to store newborn blood samples.
A bill before the House Civil Law Committee today would allow the department to save blood samples and test results indefinitely, according to Minnesota Public Radio News. The program tests newborns for 55 rare conditions that could be harmful if not treated early in life.
Under the bill, parents could refuse their consent, but they would have to fill out paperwork to do so.
In January, the Minnesota Department of Health was forced to destroy 1.1 million newborn screening cards after losing a court fight. The department failed to prevail in large part because it had never secured the legal authority to hang on to the cards and test results. It also had not asked parents for permission.
The case was argued by attorneys Scott Kelly, Randall Knutson and Daniel Bellig of Farrish Johnson Law Office in Mankato. They filed suit on behalf of 100 people who claimed the state had illegally retained residual blood samples and used them for medical research. The clients reached a settlement in January where the state would pay $975,000 in attorneys' fees for the 21 families that sued.
The pending bill would help Minnesota rebuild its newborn screening archive, which can be a life-saving resource for some children and their families, said Nancy Mendelsohn, director of the department of Medical Genetics at Children's Hospitals and Clinics of Minnesota.
"If a child presents sick, we can go back and see whether or not there was an abnormality," she said. "It's a way of looking at their health overall."
The archive also helps researchers validate screening results, she said. The blood spots can be used to develop new tests to screen for other life-threatening conditions, she said.
The legislation would allow parents who object to an open-ended storage policy to opt out of the health department's program.
But new parents may not have the energy to thoroughly read the newborn screening information they receive in the hospital, said Twila Brase, president of the Citizen's Council for Health Freedom, a health privacy advocacy group.
"They have to understand that this is going to the government, that the government will store it and use it unless they say no," Brase said. "And at the time of birth, it is a very frenetic time, it's an exhausting time, parents describe themselves as being in a fog."