Reporting Liz Collin
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MINNEAPOLIS (WCCO) — Minnesota’s highest court ruled Wednesday that parents will have a say in how the government handles the DNA of their newborn babies.
In Minnesota, unless a family opts out when a baby is born, blood is taken and sent to a lab to be tested for dozens of disorders. When the testing is done, the sample is sent to the Minnesota Department of Health for storage, and can sometimes be used for studies.
After years of legal battles, parents will have more of a say in that last step.
Until now, parents had to ask for the form after giving birth to opt out of the storage program.
On Wednesday, a ruling by the Minnesota Supreme Court said that doesn’t go far enough and written informed consent is required for the use, storage or dissemination of any remaining blood samples or test results after the completion of the newborn screening.
Megan Hughes is one mother who wishes she knew more about what was happening when her daughter Jane was born three years ago.
“I guess I didn’t know that was happening. I think that’s a little strange. I think it’s something we need to know about,” Hughes said.
The Citizens’ Council for Health Freedom has been involved in the fight for eight years when it first discovered the state’s storage system with more than 800,000 blood samples on small white cards.
“It makes a huge statement, not only in Minnesota, but across the country,” said Twila Brase, President of Citizens’ Council of Health Freedom. “We do not believe our DNA becomes government property and we look at the possibility of what could happen if it were to stay that way.”
The group sees it as a step in the right direction. Mothers, like Hughes, also see it as another important decision to make.
“They’re people. We have to think about how we can take care of them,” Hughes said.
The Minnesota Supreme Court also ruled nine families that filed a lawsuit against the Department of Health need to be heard in district court. These families want to know if their kids’ blood samples were sent out for research and how to get them back.
A statement from the Minnesota Commissioner of Health, Dr. Ed Ehlinger on the Minnesota Department of Health’s behalf said:
“We are reviewing the court’s decision to determine the potential implications of the ruling on the ongoing operations of the state’s Newborn Screening Program. This important public health program protects Minnesota babies from serious congenital and heritable disorders.”