Sneak Attack on Genetic Privacy

06/28/2007

Today, MN Department of Health appeals the judge's ruling that requires parent consent for government storage and use of baby DNA


St. Paul/Minneapolis - Genetic privacy got a slap in the face today, says Citizens' Council on Health Care.

CCHC has learned that the Office of Administrative Hearings received a letter this morning from the Minnesota Department of Health (MDH) asking the chief administrative law judge to overturn the March 27, 2007 OAH ruling that upholds genetic privacy rights for baby DNA.

"This is a sneak attack on genetic privacy. It's a sneak attack on babies, on families, on the genetic privacy and DNA ownership rights of all citizens," says Twila Brase, president of CCHC.

"We find it especially suspicious that the letter was delivered just as the Fourth of July holiday is about to begin. The judge's decision must be made by July 6th. Is the Department trying to making sure their action receives no media attention?"


The Controversy:

* After the public protested the Department's proposed changes to the Newborn Screening Rules, a public hearing was held on January 23, 2007. CCHC testified to the lack of informed parent consent requirements, MDH long-term storage and ownership of baby DNA, and genetic research on babies without parent consent.


* On March 27, 2007, the Office of Administrative Hearings released a decision in favor of concerns expressed by CCHC, and in alignment with the state genetic privacy law passed in 2006.


* The Department then had the option of using the next 6 months to comply with the ruling, seek changes from the legislature, or appeal the ruling.


* MDH tried to get the 2007 legislature to exempt newborn screening (genetic testing) from the 2006 genetic privacy law, but after testimony from CCHC, legislators refused.


* Today, MDH appealed to Chief Administrative Law Judge Raymond Krause. He must rule by Friday, July 6.

700,000 Babies

"The DNA of nearly 700,000 babies is being held by the health department. Most parents don't even know; were never told. As the judge said in her ruling, state law never allowed the health department to store baby DNA," says Brase.

"The department has done this without any legal standing, and now they hope a judge will let them keep the DNA they never had a right to take," says Brase.

"The fact that the Department chose to use the Fourth of July holiday to appeal the decision seems to be a sign of just how little they want the public to be informed about what they're doing," she added.