CCHC Calls on Gov. Pawlenty to Require Parent Consent for Storage and Use of Baby DNA

Delivers hundreds of petitions to the Governor

Minneapolis/Saint Paul - Only the Governor can stop the Minnesota Department of Health from eliminating informed parent consent requirements for the storage, use and sharing of newborn citizen blood and DNA, says Citizens’ Council on Health Care at a press conference held today at the Minnesota State Capitol.

“By eliminating informed consent requirements for the storage, use and sharing of blood, DNA and genetic information, S.F. 3138 strips a whole class of citizens—our youngest members—of their genetic privacy rights. This bill is a major violation of privacy rights, parent rights, patient rights and DNA property rights,” says Twila Brase, president of CCHC.

Speaking at the CCHC press conference, Sen. Betsy Wergin (R-Princeton) said, “The Minnesota Department of Health should not be collecting and storing DNA data of infants without the express written consent of the parents of the children. This is a very real breach of personal data privacy.” Sen. Wergin had attempted to add informed consent requirements to the bill during the Senate debate.

“I can’t understand what they’re so afraid of. As a parent, I should have a right to know what is happening to my children’s DNA and to give permission where I want to give permission,” said Michelle Ingram, mother of seven children, who recently discovered that the DNA of two of her children are in the health department’s “DNA Warehouse.”

At issue is S.F. 3138, the Minnesota Department of Health’s bill to eliminate informed consent requirements.

In March 2007, an administrative law judge ruled that the Department must follow the informed consent requirements of the 2006 Minnesota Genetic Privacy Law (M.S. 13.386) for the storage, use, and dissemination of infant blood and DNA. The Department appealed the decision. The appeal was denied. The Commissioner of Health came to the legislature this session seeking to exempt the collection, storage, use, and dissemination of baby blood and DNA from the state genetic privacy law.

Bipartisan support for informed consent is strong. One consent amendment in the House garnered the votes of most Republicans and 18 DFLers: 64-69.

“If this bill becomes law, it means that the 780,000 children whose DNA has already been illegally stored in the “DNA Warehouse” and claimed as state property will not be protected by the Minnesota genetic privacy law. Like the 42,210 children who have already been subjects of government genetic research, the DNA and genetic information of all these children can be used and given to researchers now and into the future without consent. It means that the 73,000 children born each year will not be protected by the informed consent requirements of the genetic privacy law. It means that the DNA and genetic code of our youngest citizens can be profiled, probed, analyzed and experimented on into adulthood without consent,” said Ms. Brase.

“We are calling on the Governor to require informed parent consent in this bill or to veto it so that the children, the parents, and the citizens of Minnesota do not lose the protections they have today under the genetic privacy law’s informed consent requirements.”

Twila Brase can be reached at 651-646-8935

Links to documents and letters from the Governor, the Administrative Law Judge, the Minnesota Department of Health and CCHC can be found at http://www.itsmydna.org