Genetic Privacy Rights to Be Eliminated?

House Committee Votes to Exempt Newborn Citizens from Minnesota's Genetic Privacy Law

Minneapolis/Saint Paul - Citizens' Council on Health Care has denounced last night's House committee vote to undo the State Genetic Privacy Law.

"Last night's vote was a vote to begin unraveling the genetic privacy rights of all Minnesotans," says Twila Brase, president of CCHC, who testified at the hearing. "If this bill passes, informed written consent rights will no longer be required before the State takes, stores, and uses the genetic information and DNA of newborn citizens."

The bill:

  • eliminates genetic privacy rights for newborn citizens and their parents
  • eliminates written informed parent consent requirements from government storage, use, and sharing of newborn genetic information, including newborn DNA
  • eliminates the right of parents to sue for legal redress of State violations of genetic privacy rights
  • excludes newborn DNA from the definition of "genetic information" allowing it to be extracted from newborn blood and analyzed without parent consent.

"The Department's actions will hurt children. Last year, 89 parents chose not to have their children tested at birth. The parents who talk to us about their decision to opt out of testing say they wanted the testing but they didn't want the government to have their baby's blood and DNA," say Brase.

There are currently more than 819,000 children in the Department's baby DNA repository. The Mayo Clinic, which has a testing contract with the Department also has a baby DNA repository for research. In addition, more than 1.5 million children's genetic test results are stored in a Department database. According to statistics on the Department's website, more than 52,000 children have been subjects of genetic research, most without consent.

In 2007, the Chief Administrative Law Judge ruled that the Minnesota Department of Health is in violation of the 2006 Minnesota Genetic Privacy Law (M.S. 13.386) regarding its practice to store, use, and disseminate newborn blood to researchers without written informed consent from parents. On March 11, 2009, nine families sued the Department in Hennepin County Court.

"The Minnesota Department of Health wants to legalize their illegal activities. This bill will allow them to claim newborn DNA as State government property unless parents in the midst of post-labor and delivery exhaustion know enough to say no. This is a violation of the parent and newborn rights," says Brase.

Media Contact:

Twila Brase, President
Phone: 651-646-8935 (office)