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.”

Comments (11)
  1. DougT says:

    Excellent. What is the government doing with privet citizens (new born) blood anyway? Its none of their damn business – We are freeman who own the State – we are not their pets……

    1. Elisha says:

      This is NOT the government intruding on these families (even thou the gov’t intrudes on everything else) … it is companies like the Mayo Clinic or University of Minnesota doing research on these samples without anyone knowing about it or without the families’ consent. These companies are using these blood samples to benefit themselves in doing research on all sorts of things.

      When a baby is born, doctors and hospitals must have the families’ consent to screen the newborn for genetic and congenital disorders. If they don’t get the consent … they are NOT suppose to screen the newborn. The consent that these doctors and hospital get is ONLY for these inherited diseases. Most families want to know and give their consent.

      The problem has BEEN that these doctors or hospitals store these blood samples for YEARS and do all kinds of research, Would you like to find out 20 years from now that they cloned your little Johnny or Sally?

      This clearly wrong … the Supreme Court did a good thing here.

  2. BT says:

    So are they currently still taking the blood samples or because there is a lawsuit pending are they barred from doing so?

  3. Mr. Always Right says:

    sounds to me like those lower courts were way off….good job Supreme Court…sounds like a slam dunk for the families

  4. Rockford says:

    Who cares? What possibly could be done with the blood that is harmfull to the families. If it allows the state health department spot trends that help the public, what is wrong? This governemnt intrusion paranoia has been taken to the extreme.

    1. DougT says:

      Excuse me? My blood is for anyone’s taking? Its a basic thing – it our “biological” rights. 🙂

      I do not belong to any state, special group or “community”…. – I am am a member of my family and that is where my responsibility lies.

      And I do not care if it saves anyone else- its mine and I have a say if anyone trys taking it for whatever “socially responsible” (major oxymoron there) reason/cause/flavor of the day. Dr Frankenstein is not using my nor my families dna …..

    2. A Concerned MN Parent! says:

      Yes, it’s true paranoia! This is what “public health’ is all about – do research what is in the ‘public’ good – and believe me the State Dept of Health take in consideration all privacy concerns. I certainly hope those families who choose to destroy their child’s blood spots understand completely what they are giving up….and if their child happens to have ‘medical issues’ in the years to come and God forbid dies — would not have this sample to use to check for possible diagnosis….We just can’t go backwards – the research that is done will save future babies – why can’t people see this as a POSITIVE!!!

  5. DougT says:

    If they ask the question and make clear what is going to be done with this blood then perhaps they can do this. However once the blood is out of your control who knows what it might be used for – no thank you.

    In the real world bad things usually happen. Thats just the way it is. Wake up and live your life

  6. DougT says:

    “public health’

    “and believe me the State Dept of Health take in consideration all privacy concerns”

    You seem to have an naively high trust level in the abilities, motivation and intentions of government agencies- despite a history of their incompetence and unworthiness.

    “Good Government” is a concept that has never existed in the real world – only in the Delusional minds of the Utopians.


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