SUCCESS: Citizen Efforts Protect Genetic Privacy Law

MN Legislation to Repeal Genetic Privacy Rights at Birth did not Pass

St. Paul/Minneapolis – Engaged citizens across the state of Minnesota have protected the Minnesota Genetic Privacy Law—and individual DNA property rights—for another year, says Citizens' Council of Health (CCHC). The state health department's legislation to repeal genetic privacy rights at birth did not pass.

"The Minnesota Department of Health must begin immediately to comply with the state genetic privacy law by obtaining the required informed written parent consent for government storage, use and dissemination of newborn DNA," said Twila Brase, president of CCHC.

"There is nothing more personal, more private, more yours than your DNA and your unique genetic code. The law requires express informed written parent consent for the storage and use of newborn DNA, yet the Minnesota Department of Health refuses to follow the law. The rights of the 73,000 babies born each year in Minnesota are being violated." she said.

According to an administrative law judge in March 2007, the Minnesota Department of Health is violating the state genetic privacy law (M.S. 13.386) by storing and conducting genetic research on newborn blood which has been collected solely for the purpose of newborn genetic testing. When state health officials appealed the ruling in July 2007, the Chief Administrative Law Judge denied their appeal.

The Minnesota Department of Health came to the legislature in 2008 and 2009 with legislation to exempt government storage, use, and research on newborn blood and DNA from the law's informed written parent consent requirements. Republican Governor Tim Pawlenty vetoed the 2008 legislation but did not require his health commissioner to comply with the genetic privacy law. On March 11, 2009, nine families sued the Minnesota Department of Health and the State of Minnesota under Chapter 13, the Minnesota Government Data Practices Act.

Genetic Privacy repeal language screenshotAlthough House File 1341, the health department's bill to exempt newborns from consent protections in the genetic privacy law, was listed for three days on the House Calendar for the Day, Rep. Paul Thissen (D-Mpls.), chief author of the bill, did not choose to bring the bill forward for a vote. Since the legislature runs on a 2-year cycle, HF 1341 and its companion bill, SF 1478, remain alive for legislative action during the 2010 session. (LEFT: proposed Department language, HF 1341, lines 1.21 - 1.24)

"This legislation should be dropped. The health department's attempt to repeal constitutional privacy rights and informed parent consent should be ended. Repealing genetic privacy rights at birth, and eliminating parent consent requirements for government storage, use and analysis of newborn DNA, would mean the end of genetic privacy rights for all future generations." said Brase.

"The Minnesota public won a major privacy victory this year. The state health department bill to repeal genetic privacy rights and eliminate consent requirements for government storage and use of newborn DNA did not pass. We are grateful to every Minnesotan who sent an email, made a phone call, came to a hearing, signed a petition to the governor, and let their voice be heard," said Twila Brase, president of CCHC.

Media Contact:

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