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State can now keep samples indefinitely, but parents can opt out

Senate passes newborn blood-screening bill

The Minnesota Senate has passed a bill allowing the state to retain blood samples from newborn babies indefinitely.

The bill was prompted by a 2011 Minnesota Supreme Court ruling and settlement that resulted in the destruction of more than 1 million blood samples stored under the Minnesota newborn screening program.

Mankato attorneys Randall Knutson, Daniel Bellig and Scott Kelly first started work on the case in 2009 when they were first contacted by concerned parents. Minneapolis attorney Sam Hanson joined the plaintiffs during the appeal. The state agreed to spend $975,000 to settle the suit.

Senators voted 36 to 20 to send the proposal to Gov. Mark Dayton.

The legislation allows parents to refuse to grant the state permission to keep their infants’ samples.

Proponents of the measure say researchers use those blood samples to test for disorders and develop new tests for other disorders. Opponents say the legislation allows the government to own one’s DNA.

The Minnesota Supreme Court overturned two lower courts’ opinions in the case Bearder v. State of Minnesota, a case brought under the Genetic Privacy Act.

Within two days of being born, every baby has drops of its blood placed on a specimen collection card. The Minnesota Department of Health has performed these tests since the 1960s. The cards are analyzed for 53 rare and treatable disorders that can only be found before symptoms occur through newborn screening, but the MDH uses only about 70 percent of each sample. The rest is stored and made accessible to outside organizations for additional testing without the knowledge of the baby’s parents. About 800,000 samples were still in storage in 2008, and 50,000 samples had been used by third parties for purposes other than screening.

A group of parents sued the MDH for violating the Genetic Privacy Act by allowing outside groups to access the blood samples. In Bearder, the high court agreed with the parents. The court ruled that the MDH has limited autonomy as to what it can do with the blood it collects and how long it stores it.

The bill also bans the sale of the samples and any related test results and data.

 

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