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Senate approves newborn-screening bill

ST. PAUL — A bill that would allow the state to store newborn blood samples indefinitely unless a parent opts out won the Minnesota Senate's approval on Wednesday.

It's an issue that has pitted medical groups, who argue that storing the samples will help save lives, against privacy rights groups, who contend it undermines genetic privacy rights in the state.

The bill has to do with the state's 49-year-old newborn screening program. As part of that program, blood samples are collected from newborns during the first 24 to 48 hours of life and analyzed for more than 50 disorders. Historically, those blood spots were stored indefinitely and used to help develop tests to identify other disorders.

Then, in 2006, the Minnesota Legislature passed a genetic privacy law that required informed written consent for the collection, storage and use of genetic material. The Minnesota Supreme Court ruled in 2011 that the use of the blood spots for anything other than the initial screening was not allowed under current state statute.

In January, the Minnesota Department of Health announced it had destroyed 1.1 million archived blood spots as part of a settlement it had reached with 21 families suing the department over the program. In 2012, lawmakers passed legislation that all newborn blood spots are automatically destroyed after two years unless parents approve allowing the spots to be stored longer.

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Supporters of the bill allowing for the indefinite storage say the bill gives parents plenty of options for opting out of the program while helping protect children's health.

"I think it saves lives. We were a nation-leading program, and I think it restores us to that," said Sen. Carla Nelson, R-Rochester, who supported the measure.

Parents have the option

The bill, sponsored by Sen. John Marty, DFL-Roseville, gives parents the option of not having their child's blood spot stored and requires written parental consent for any research to be done on the blood spots not related to the newborn screening program. It cleared the Senate by a vote of 41 to 22. Rep. Kim Norton, DFL-Rochester, is sponsoring a similar measure in the House and said she expects a vote could come next week.

Critics of Marty's bill argue it assumes the government has ownership rights to the children's genetic information instead of the parents.

"This isn't about stopping testing. This isn't about hurting children. This isn't about parents choosing to hurt their children. This is about who owns the information and what right do they have to control that information," said Sen. Michelle Benson, R-Ham Lake.

She offered an amendment that would have required parents to opt-in to having the blood spots stored instead of them having to opt out. It failed 37-28. Her amendment won the support of three local Republicans — Nelson, Sen. Jeremy Miller, of Winona, and Sen. Dave Senjem, R-Rochester. All three went on to vote in favor of the final bill even though it did not include Benson's amendment.

Marty spoke out against the amendment, arguing state policy should be about what is in the best interest of public health.

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"I'm sorry. It's not a good decision for the public health," he said. "I think if you talk to any pediatricians, they are going to say the same thing. That's why we've been able to save 5,000 lives over the past 50 years," Marty said.

Getting the newborn-screening bill passed has been the number one legislative priority of the Minnesota Chapter of the American Academy of Pediatrics . The organization's president, Dr. Robert Jacobson, applauded the Senate's actions. Jacobson, who is also a Mayo Clinic primary care physician, said in a statement that allowing the blood spots to be saved is especially critical in cases of missed, delayed or false diagnosis.

"This bill positions Minnesota to save as many lives as possible while upholding parents' rights to refuse testing, request destruction of test results, or both," he said.

Meanwhile, the bill's opponents vowed to keep up their lobbying efforts to kill the measure. Twila Brase, president of the Citizens' Council for Health Freedom , denounced the Senate's actions and accused lawmakers of supporting stripping away parental rights.

"This is not about newborn screening," Brase said. "This is about what happens after the newborn screening and who has primary control of the DNA. The Senate just voted to give primary control of the DNA of the child to the government."

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