Enforce Infant DNA Privacy Law, Minnesotans Tell Governor

Published February 1, 2009

Citizens across Minnesota are calling on Gov. Tim Pawlenty (R) to enforce a state law opposing the warehousing of newborn blood and DNA without informed, written parental consent.

At a December press conference, concerned parents joined the Citizens’ Council on Health Care (CCHC) in calling on Pawlenty to bring the health department into compliance with state law. CCHC asked Pawlenty to issue a statement guaranteeing the department’s compliance with the genetic privacy law and prohibiting the warehousing, use, or sharing of infants’ blood without parental consent.

Health Department Not Complying

The Minnesota genetic privacy law, which became effective on August 1, 2006, requires informed, written consent for the collection, storage, use, or dissemination of genetic information. The requirement specifically covers government agencies as well as private entities.

The state legislature sought last year to exempt a newborn genetic testing program from the genetic privacy law, but the governor vetoed the bill after being petitioned by hundreds of concerned citizens.

“Thanks to Gov. Pawlenty’s veto, the Minnesota Genetic Privacy Law still demands … parental consent for storage of blood and DNA for any purposes beyond the initial testing,” said DeEtta Moos, a Minnesota mother of four.

Parents Speak Out

“We thought the governor’s veto was supposed to solve this, but we have now discovered that the storage continues,” said Ryan Sibinski, an expectant father of twins. “I request that the Department of Health make sure that I am clearly asked to consent to the storage, use, and sharing of my children’s blood and DNA. This is my legal right.”

CCHC also asked Pawlenty to begin dismantling the state’s DNA warehouse, to protect the genetic privacy rights of the more than 780,000 children whose DNA has been claimed by the state government and warehoused without parental consent.

Massive Violation of Privacy

At least 42,210 Minnesota children already have been made subjects of genetic research without parental consent, according to statistics obtained from the state department of health.

Approximately 73,000 babies are born in Minnesota each year, according to state figures. The blood of more than 780,000 children has been warehoused by the department of health, where it is considered property of the state government.