Minnesota Biobank Bill Threatens Genetic Privacy

Minnesota Biobank Bill Threatens Genetic Privacy
April 24, 2013

Twila Brase

Twila Brase is the president of the Citizens' Council for Health Freedom (read full bio)

Do you own your DNA? Not if you live in Minnesota. The state’s DFL-controlled legislature is planning to eliminate genetic privacy rights and individuals’ ownership and control over their DNA data.

Minnesota health care officials recently admitted to building an unauthorized state biobank of DNA and health data on individuals. They’ve been doing it for decades all on their own. But they got caught two years ago and now want the legislature to retroactively legalize what they did and allow them to keep doing it in the future.

Secret Warehousing of DNA

The state’s warehousing of biological specimens and health data in a biobank was unexpectedly revealed after the Minnesota Department of Health lost a court case in November 2011. The Minnesota Supreme Court found state health officials in violation of the 2006 Minnesota Genetic Privacy Act regarding newborn DNA taken at birth. Under the newborn screening law, the department has legally collected and tested newborns’ DNA since 1965, but in July 1997 health officials began storing, using, and sharing the DNA for other purposes.

The court said state law only allows collection for testing—and they ruled the state’s genetic privacy law forbids storage, use, or dissemination of genetic information without the written consent of the individual or parent.

Alarmed by the court's ruling, Department of Health officials came to legislators and essentially said, “This isn’t all we’ve been doing without statutory authority. We need a law to protect us from other lawsuits.” In testimony, they admitted they have been collecting genetic information for decades without specific legislative authority. They wrote their own rules to do it.

The department’s legal protection and biobank construction legislation, wrapped into the omnibus data practices bills, passed the Minnesota Senate (SF 745) and is awaiting a floor vote in the Minnesota House (HF 695).

No Legal Authority

Last session, in exchange for a one-year exemption from the state’s genetic privacy law—a “get out of jail free card,” as it was called—Department of Health officials agreed to give the legislature a report of all specimens and health data they’ve been collecting without legislative authority. That unofficial three-page list was only released the day the Senate vote was taken. The first page is a list of authorized collections. The second and third pages are filled with the data the department has been storing, analyzing, and using without any legal authority.

The department-authored biobank bill specifically states, “consent of an individual is not required.” In fact, it specifies 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.” And it specifies that those specimens contain DNA.

Boundless Ability to Horde DNA

If the bill is enacted, the department could keep DNA forever and use it and other health data for any number of purposes. For example, the bill authorizes use in 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.” In short, there is nothing they cannot use it for.

The Senate bill would override the state’s genetic privacy law and the Minnesota Supreme Court’s ruling. The court requires newborn genetic test results be held only 25 months, with destruction beginning mid-December. The Senate bill would require newborn test results be kept until June 1, 2014, giving the department one more legislative session to try to undo the court’s ruling and gain permission to keep the data. It would eliminate the court’s existing privacy protections for about 35,000 children.

The proposed legislation is a violation of genetic privacy rights that will protect the department from being sued by individuals whose privacy they have long violated just because they could. The Minnesota Department of Health wants an exemption from the state’s genetic privacy law, but the legislature should not give it to them.

Twila Brase

Twila Brase is the president of the Citizens' Council for Health Freedom (read full bio)