Citizens win privacy battle for another year

Residents of Minnesota have fended off a legislative move that essentially would have given the state unrestricted access to the DNA of all babies born in there for at least another year, according to a privacy activist who has been battling such programs.

The report comes from Twila Brase, president of the Citizens' Council on Health Care, who confirmed the legislature failed to approve a plan by the state health department to "repeal genetic privacy rights at birth."

"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," she said.

"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 warned.

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An administrative law judge ruled in 2007 the Minnesota Department of Health is violating the state genetic privacy law by storing and conducting genetic research on newborn blood which has been collected solely for the purpose of newborn genetic testing.

An appeal of the decision was rejected. So the Minnesota Department of Health approached the legislature last year and this year seeking an exemption from the privacy law to allow government storage, use and research on newborn blood samples.

Earlier this year, nine families sued the state Department of Health and others over the program that apparently has been continued without authorization.

Brase said because of the setup of the state legislature, the proposal will remain alive for consideration during 2010, but she said the citizens who raised objections were key to the result this year.

"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 e-mail, made a phone call, came to a hearing, signed a petition to the governor, and let their voice be heard," said Twila Brase.

WND reported earlier this month when Brase' organization issued a report that warned such DNA databases could end up being a prelude to the return of eugenics in the U.S.

The report said the concept of "identifying" those who would be "unsuitable" for reproduction is enough reason for parents to be alarmed.

Brase said most states do not require parental consent for newborn genetic testing now or for the government to keep the genetic results. Most states now keep DNA results for a period of time – some extending indefinitely.

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Further, her report said, "Most parents have no idea that government is doing the testing or retaining the data and DNA."