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Privacy organization praises court ruling on baby DNA

An organization that discovered and fought a state program in Minnesota to take DNA from newborns, put that DNA into a state data system and use however bureaucrats thought best is praising an appeals court decision on a similar fight in Michigan.

It was the Citizens’ Council for Health Freedom that uncovered the Minnesota program back in 2003.

It called on Minnesota’s governor to destroy the DNA files later, and in March 2009 brought parents together to file the first lawsuit in the nation against state possession of such intensely private data.

Eventually, it secured a parental consent amendment to the Newborn Screening Saves Lives Reauthorization Act of 2014 that requires parental consent for any governmental use of newborn dried blood spots, which contain DNA, for federally funded research.

Now, a decision from the 6th U.S. Circuit Court of Appeals has returned to a lower court a case brought by plaintiffs Adam and Ashley Kanuszewski, Shannon LaPorte and Lynette Wiegand against the Michigan Department of Health and Human Services and Michigan Neonatal Biobank and their officials.

The plaintiffs raised concerns about the constitutional violations built into the state Newborn Screening Program, which demanded those blood samples from newborns.

The circumstances were similar to the Minnesota case, in that Michigan used the blood samples for testing for diseases, but then retained them for whatever use state officials wanted.

The appeals court ruling said some claims properly were dismissed, but those in which the plaintiffs seek prospective relief against the defendants in their official capacities relating to their “alleged violation of the parents’ substantive due process rights in connection with defendants’ retention and ongoing storage of the blood samples” should have been decided.

“These claims are not subject to qualified immunity and fall within the ex parte Young exception to state sovereign immunity,” the judges ruled.

“The parents have a fundamental right to direct the medical care of their children, and their claims may go forward so that the parties can present evidence related to defendants’ actions and the legal implications of those actions.”

CCHF chief Twila Brase noted, “We applaud yesterday’s federal appeals court ruling on retention and use of newborn DNA. The Sixth Circuit Court of Appeals recognized the fundamental and Fourth Amendment rights of parents to protect their children’s DNA from state retention, transfer to a biobank, and long-term storage and remanded it back to the federal district court ‘for further proceedings consistent with this opinion.'”

She continued, “The court is rightly concerned about the state of Michigan storing, using and sharing newborn DNA for purposes beyond the initial detection and treatment of newborn conditions that are life-threatening. And the parent-plaintiffs are rightly concerned about a state-funded biobank that holds newborn DNA in perpetuity for the purpose of conducting genetic research using newborn DNA without consent or with consent under duress.”

She noted that a 2013 study concluded, “Formally marketing double de-identified newborn screening dried blood spots (DBS) for health research, Michigan is home to one of the largest biobanks in the United States. Run by the Michigan Department of Community Health, the BioTrust offers a collection of biospecimens whose size, unbiased sampling and linkability to public health data make it a ‘goldmine’ for public health assessment and a potential key to important health questions.”

Brase said, “We’re also pleased that the court recognized that newborn genetic testing may present a risk of future harm. The court essentially invites pregnant women to bring such a lawsuit for their consideration ‘which would require us to address the merits of’ the issue of harm due to the screening without parent consent.'”

She said, “As this case proceeds in the federal court system, Citizens’ Council for Health Freedom looks forward to the possibility of securing parent consent requirements nationwide prior to the storage and use of newborn DNA. We would also like the courts to recognize that requests for parent consent that happen when parents are vulnerable, in the fatigue and fog of the post-delivery period, are not true consent. Too often parents have no idea what they are signing and do not recall doing so. They think it’s just another hospital form.”

“As studies and news reports prove, parents are deeply concerned about protecting their child’s genetic privacy. This case should not only set a standard for parent consent requirements for state bio-banking and use of newborn DNA, it should also set a standard for true consent, a process that forbids the state from exploiting the vulnerability of parents post-delivery when parents can least protect their newborn children’s genetic privacy rights,” she said.