'Biobank' bill threatens genetic privacy

published: St. Paul Pioneer Press
April 17, 2013

Your genetic privacy rights could soon be eliminated.

Minnesota health officials have built an unauthorized state biobank of DNA and health data on individuals. They admitted in testimony to the Legislature that the Minnesota Department of Health has been collecting genetic information for decades without specific legislative authority.

They now want the Legislature to retroactively legalize what they did -- and let them keep doing it into the future. The department's biobank legislation -- wrapped into the omnibus data practices bills, H.F. 695 and S.F. 745 -- is ready for a floor vote in the Minnesota House and Senate.

The state's biobank of biological specimens and health data was unexpectedly revealed after the Minnesota Supreme Court found the state health department in violation of the 2006 Minnesota Genetic Privacy Act regarding newborn DNA. Under the newborn screening law, the department has collected and tested newborn DNA since 1965, but in July 1997, health officials began storing, using and sharing it. The court said state law only allows collection for testing -- and the privacy law forbids storage, use and dissemination of genetic information without the written consent of the individual or parent.

Worried by the court's ruling, health officials came to legislators and essentially said, oh, by the way, this isn't all we've been doing without statutory authority. We need a law to protect us from other lawsuits.

Last session, in exchange for a one-year exemption from the state genetic privacy law -- a "get out of jail free card," as it was often called -- health officials agreed to give the Legislature a report of all specimens and health data they've been collecting without legislative authority. Based on that information, it would be determined whether they would receive lawsuit protection during this session.

The election changed everything. No such report has been provided. Instead, health officials came with legislation to retroactively and prospectively exempt their unauthorized DNA and data collections from the genetic privacy law.

The health department has collected blood, tissues and private health data without legislative authority. If this bill becomes law, we'll never know what they've been collecting or what they've been doing with it. There will be no end to what they can collect, how it could be used, and from whom it may be collected without the individual's knowledge or consent.

The department's biobank bill specifically states, "consent of an individual is not required." In fact, it specifies that the health commissioner "may collect, use, store and disseminate biological specimens and health data, genetic or other." It defines "genetic information" as "biological specimens and health data." The government could store, use and share your DNA indefinitely.

If enacted, the department could use DNA and health data for a broad range of purposes, including criminal investigations, "monitoring the health status of a population," research and analysis and any other activities deemed necessary to "protect or improve the health of individuals and populations." Furthermore, boards of health and community health boards would be granted the same retroactive protection and prospective authority.

Additionally, the Senate bill would sidestep the Minnesota Supreme Court's Nov. 16, 2011, ruling. The court requires newborn genetic test results be held only 24 months, which is all the longer health officials said was necessary under a federal rule. Daily destruction should begin Nov. 17. But the Senate bill would allow newborn test results to be kept until June 1, 2014, giving the department one more legislative session to try to undo the court's ruling. It would also eliminate the court's privacy protections for about 35,000 children.

The department's biobank legislation will exempt health officials from the consent requirements of Minnesota's genetic privacy law and allow state officials to keep years of DNA-rich biological specimens and private data. The legislation will allow virtually unlimited sharing of private genetic information by the government, including for research. And the legislation will protect the department from being sued by individuals whose privacy has been violated.

The Minnesota Department of Health should not be given an exemption from Minnesota's genetic privacy law nor allowed to eliminate genetic privacy rights. The Minnesota Legislature should not help them do it.

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