Citizens Petition Governor Pawlenty to not Repeal Genetic Privacy Rights

St. Paul/Minneapolis – Citizens' Council of Health Care (CCHC) held a press conference today to call on Governor Pawlenty to veto state health department legislation that would repeal genetic privacy rights and eliminate current informed written parent consent requirements over the storage, use, and sharing of newborn DNA. A tall stack of citizen petitions from all across the state of Minnesota were delivered to Governor Pawlenty’s office.

“The genetic privacy and DNA property rights of all future generations are at stake with this legislation. If the health department’s legislation to eliminate genetic privacy rights makes it to the Governor’s desk, we call on Governor Pawlenty to protect the rights of all citizens, including newborn citizens, with a veto,” said Twila Brase, president of CCHC.

Matt Brzica, father of four, said, “We know today that DNA is the fundamental building block of humans. How then can our legislators even begin to rationalize the seizure of the stuff that makes us who we are without informed consent.”

“State government should not have first dibs to the DNA of citizens. DNA is the property of the individual, not the property of State government. Minnesota must retain the informed written consent requirements that are in law today regarding DNA taken at birth from infants,” Brase added.

Process & History:
Shortly after birth, hospital staff prick the heels of newborn babies. Five spots of blood are collected on a special card. The card is sent directly to the Minnesota Department of Health for genetic testing. At present, the Department tests for 53 conditions. Prior to July 1, 1997, the health department discarded the blood after testing. On July 1, 1997, through an executive decision, the health department begin warehousing newborn blood spots and using and sharing them for genetic research. No law permits storage or research and no parent consent has been obtained.

Currently more than 819,000 children have their DNA warehoused by the State and more than 1.5 million children’s genetic test results are in the State genetic registry (since July 1, 1986). More than 52,000 children have been subjects of genetic research.

Violation of Law:
On August 1, 2006, the Minnesota Genetic Privacy Law went into effect. Informed written consent is required for government collection, storage, use, and dissemination of a person’s genetic information.

On March 23, 2007, an administrative law judged ruled that the Minnesota Department of Health’s storage, use, and dissemination of newborn blood without written informed parent consent is a violation of the genetic privacy law.  The Department’s appeal to the Chief Administrative Law Judge was denied. On March 11, 2009, nine families filed a lawsuit against the Department and the State of Minnesota.

Legislation to Overturn Law:
The Minnesota Department of Health has continued to violate the genetic privacy law, and now seeks to overturn the law.

The Health Department’s proposed legislation, HF 1341 (Thissen) and SF 1478 (Lynch), will exempt the Department’s collection, storage, use and dissemination of newborn DNA from the informed consent requirements of the state genetic privacy law. The Department will be allowed to store, use and share newborn DNA for research and other purposes. Parents will only have the right to object and opt-out—if they can figure it out.

“When the nurse comes in, most parents think it’s just the hospital doing a simple test on their baby. They have no idea that the blood is sent to the State government, claimed as State government property, stored and used for genetic research. Only with informed written consent requirements will parents have the power to protect their children’s genetic privacy.”

“All citizens, including newborn citizens, have a right to keep private their genetic code and whatever secrets it may hold to their medical future. The Fourth Amendment protects citizens from having their DNA taken and analyzed by the government. We ask the Governor to recognize and protect those rights,” said Brase.