A decision today from the Minnesota state Supreme Court has given privacy advocates a huge victory over their state government in a fight over the retention of DNA information on all babies born in the state and the use of that data in various studies and other efforts.
The court ruled that state law does not allow Minnesota’s health agencies to take, keep and use the blood spots that include DNA data for each child without restriction. The state had argued that officials were entitled to the information and could use it for outside studies as they chose.
The case had been brought by nine families with 25 children. The Citizen’s Council for Health Freedom, which has monitored the case’s progress since it was launched, has expressed concern about the possible eugenics influences that could result from inappropriate use of DNA data.
President Twila Brase said, “We are cheered by this good news. When our organization discovered the state health department’s baby DNA warehouse in 2003 and the use of newborn DNA for genetic research without parent consent, we determined to do all that we could to stop this practice. No state law expressly permits these activities.”
She said, “We are pleased that these nine families were willing to sue the state of Minnesota. Their action and this decision now secures the genetic privacy rights and informed written consent rights of all Minnesota parents and newborn citizens.”
The majority opinion, written by Justice Helen M. Meyer, said, “The [state’s] Genetic Privacy Act … restricts the collection, use, storage, and dissemination of blood samples collected pursuant to the newborn screening statutes.
“The newborn screening statutes provide an express exception to the Genetic Privacy Act only to the extent that the [health] department is authorized to administer newborn screening by testing the samples for heritable and congenital disorders, recording and reporting those test results, maintaining a registry of positive cases for the purpose of follow-up services, and storing those test results as required by federal law.”
“This is a fantastic decision by the justices,” Brase told WND. “Now we hope that what this does is have an impact across the country on the whole baby DNA issue.”
The ItsMyDNA.org website posts information for consumers, especially parents of newborns, to show what their own state does regarding the acquisition, maintenance and use of babies’ DNA.
She said there are 18 states that keep such information from 10 years to indefinitely.
“We know at the federal level, researchers want the states to become the steward of these blood spots,” she warned. “We’re saying that this DNA is the property of the children and the state doesn’t have a right to claim ownership.”
She continued, “We are not government subjects of research by virtue of being born, and our DNA is not government property.”
The court opinion noted that in Minnesota, the state now holds hundreds of thousands of files on newborns, and “more than 50,000 blood samples have been used in studies for purposes beyond the initial screening of the newborn children. These studies have included developing new tests and assuring the quality of existing tests. Blood samples have also been used for studies unrelated to the newborn screen program.”
The state’s Genetic Privacy Act does have a provision allowing the state to do the newborn screening to check for “heritable and congenital disorders, recording and reporting those test results, [and] maintain a registry of positive cases for the purpose of follow-up services.”
But not beyond.
“Unless otherwise expressly provided by law, the [health] department must have written informed consent to collect, use, store, or disseminate those samples,” the court ruling said.
The court then said the case would have to go back to the district court to determine what remedies might be appropriate for those families who documented that their children’s blood samples had been taken, used, stored or disseminated.
“Because the record is insufficient to allow us to determine whether any of the appellants are entitled to remedies for such violation, we remand to the district court for further proceedings consistent with this opinion,” the ruling said.
The state had installed procedures that effectively made the testing and delivery of DNA data mandatory. For example, according to the CCHF, one grandmother reported:
My daughter signed a paper stating she did not want
the PKU test done because of the DNA stealing (I was there when she
did that). The nurse huffed out of the room saying that stuff doesn’t
happen. After my grandchild was born, a different nurse took the
baby. My daughter heard my granddaughter start crying. She found out
her heel was getting pricked. My daughter became furious stating
that she signed off on not getting the test. The nurse said there was
nothing in her chart saying that. My daughter demanded the blood
sample back. The nurse said they’d destroy it, but my daughter
demanded it back and got it.
In a previous report, Brase warned that the accumulation of DNA data on entire generations of the population could result in unwelcome actions.
“Suppose … expanded screening of an infant reveals not a fatal and incurable disease but instead a host of genetic variants, each of which merely confers elevated risk for some condition or other,” her report said. “Who is to say at what point an uncovered defect becomes serious enough to warrant preventing the birth of other children who might carry it? At what point have we crossed the line from legitimate family planning to capricious and morally dubious eugenics?”
Her report said most parents “have no idea that government is doing the testing or retaining the data and DNA.”
“It is not hard to imagine the day when any discovered but nonsymptomatic condition could
become a ‘pre-existing condition’ for which private insurers would not pay. The eugenic
implications are obvious. Thus, the growing collection of genetic test results and newborn DNA
could easily enable a eugenics agenda on the part of government agencies and private industry,” the report said.