Privacy Rights Under Fire in Minnesota Ruling on Baby DNA

Published October 28, 2010

The Minnesota Court of Appeals has affirmed a lower court’s ruling dismissing a lawsuit against the Minnesota Department of Health. The nine parents involved in the suit had claimed the MDH’s collection, retention, and use of baby DNA is unconstitutional and a violation of Minnesota’s Genetic Privacy Act.

DNA Is Government Property

At issue were baby DNA bloodspots collected and retained by the MDH which can then be used for studies and tests, said Twila Brase, president of the Citizens’ Council on Health Care, a nonprofit organization based in St. Paul, Minnesota.

“The Court of Appeals went back to condoning the broad authority of the commissioner to conduct studies and tests; therefore she has the authority to use the material as long as she calls it newborn blood,” Brase said. “It’s as though because she is the commissioner and she has this general authority, the sky is the limit.”

In the unanimous ruling, written by Judge Stephen Muehlberg, three appellate court justices conceded Minnesota’s newborn screening statute “does not directly address” the health department’s authority to conduct research using DNA of newborns. But they ultimately found the commissioner’s general powers to “conduct studies and investigations, collect and analyze health and vital data, and identify and describe health problems” provide sufficient authority to “retain blood specimens after testing to be used for further newborn screening-related research . . . or to otherwise refine the newborn screening program for public health purposes.”

Potential for Abuse Cited

The ruling opens the doors for potential abuse, according to Brase.

“Once the government has the blood, they can do whatever they want with it,” said Brase. “Because of this ruling, there is no genetic privacy at birth—you lose it immediately.”

According to Brase, one good result of the ruling is that it can be interpreted as counting biological material as genetic information.

“This could potentially mean that the ruling would hold that anything outside of non-newborn screening would require consent,” Brase said. “The genetic privacy law would actually cover biological material.”

Monetizing Privacy Invasion

Brase notes the Newborn Screening Saves Lives Act, signed in 2008 by President George W. Bush, has made more money for research and programs in support of the Health and Human Services secretary’s advisory committee on heritable diseases.

“This research money is an undisclosed way for health departments to profit from newborn DNA. But that’s monetizing an invasion of privacy. Health departments like MDH should get out of the newborn screening altogether,” said Brase. “You should own the DNA and test results unless you say someone else could have them.”

Brase says she and her organization intend to push for more legal protections for parents and newborns.

“It is so important that individual ownership of DNA is clarified and underscored in law,” Brase said. “Research doesn’t trump the right of personal ownership of one’s DNA.”

Sarah McIntosh, Esq. ([email protected]) is a constitutional scholar writing from Lawrence, Kansas.