Minneapolis/Saint Paul The Minnesota Department of Health has suddenly and quietly withdrawn the newborn genetic screening rule which was set to be rolled out at the end of this month, says Citizens’ Council on Health Care (CCHC). “Clearly, the Minnesota Department of Health is not interested in protecting the genetic privacy and property rights of its newest citizens and their families. Instead they hope to use the legislative process to maintain their illegal ownership of baby DNA,” says Twila Brase, president of CCHC.
After CCHC forced the Department to hold a public hearing on the proposed newborn genetic screening rule on January 23, 2007, administrative law judge Barbara Neilsen ruled that portions of the proposed rule had “defects” and required specific changes, including:
- Against the Department’s written wishes, Judge Neilsen required that parents of newborns be given a Tennessen Warning as requested by CCHC at the public hearing. The Warning, which is required for most data collection by government agencies, would fully inform parents of state government’s involvement in the testing program, the parent’s right to refuse government collection of DNA and genetic data, and how the data would be used and who could access the data if the parents permitted their baby to be tested for a list of genetic conditions.
- The judge also required explicit opt-in parent consent for the retention of newborn blood and DNA, and for dissemination of blood and genetic information to genetic researchers. Countering the Department’s executive decision ten years ago to begin retaining and disseminating newborn blood without parent knowledge or consent, Judge Neilsen specifically stated that Minnesota law does not authorize such retention and dissemination, and in fact such activities now specifically violate the 2006 Minnesota genetic privacy law.
In July, Commissioner Dianne Mandernach appealed the ruling to the Chief Administrative Law Judge, Raymond R. Krause. The appeal was denied.
According to a Department letter tucked away on the health department’s website—no press release was issued—the Commissioner is now withdrawing the rule to “seek legislative guidance on storage and use of blood spots.”
Ms. Brase provides the following statements:
“The health department has cleverly avoided getting specific consent from parents of newborn babies. They’ve avoided fully informing parents about what’s happening to their children. They’ve withdrawn the rule in hopes of using the political process to sanction 10 years of illegal blood retention and genetic research, and specifically to get approval for state government ownership of the DNA of newborn citizens.
“The department’s decision strips the judge’s genetic privacy and DNA property protections from newborn babies and their families. The Department is clearly disregarding the privacy and property rights of citizens in hopes of eventually dismissing them through the legislative process.
“Obviously these DNA samples have great value, but they belong to parents and their children, and not the State of Minnesota,” Brase adds.
“We again call on the Governor to make the Department follow the rule of law.
“We call on the Governor to protect the genetic privacy and property rights of parents and children by dissembling the health department’s warehouse of DNA wrongly taken from children and their parents, and by requiring the Department to get explicit fully informed consent from parents for newborn genetic testing.
“Minnesota’s children and parents are waiting for the Governor to protect their legal rights.”
Office of Administrative Hearing Newborn Screening Rule including all letters from the public