See July 29 Update below!

As members of the American public have become increasingly aware of these state-based Baby DNA warehouses, government ownership of newborn DNA, and government research on infants without parent consent, lawsuits against state departments of health have emerged in Minnesota and in Texas.

In Minnesota, a lawsuit was filed by 9 families against the Minnesota Department of Health and the State of Minnesota on March 11, 2009. At the request of the Department, a Hennepin County judge dismissed the case on November 24, 2009. The case will be appealed. The attorney filed a notice of his plans to appeal on January 13, 2010.

In Texas, five parents filed a lawsuit through the Texas Civil Rights Project on March 12, 2009. Texas settled their lawsuit by agreeing to destroy blood spots collected without parent consent since 2002 (all blood spots before a May 27, 2009 opt-out bill became law), but keeping the genetic test results indefinitely. The new law allows retention of newborn blood spots (DNA) unless parents sign a form either the day of the screening when they receive the form or any time in the future (state form).

Thus, Texas parents were not given consent rights by the legislature. Only dissent rights were allowed. The May 2009 law gives Texas "first dibs" to the DNA of every newborn citizen allowing government storage, use and research on infants without parent consent. Only if the parent acts is the child protected from genetic analysis and research.

After hearing WTHR news report Indiana's long-term storage of newborn DNA in 2014, Jessica Wegg and Jonathan Little, parents who are attorneys, sued the state of Indiana. The case was unsuccessful, but the parents vow to keep up the fight: "Most people in Indiana don't even know that their blood is on file, little said to The Indiana Lawyer in February 2017.

In Michigan, a group of parents sued the state of Michigan for “stolen blood” because the Michigan BioTrust for Health stores Baby DNA for research—without parental consent.  The attorney in the case, Philip Ellison, is the father of a newborn who gathered nine other families for a federal lawsuit to sue the state governmenta nd the biobank for storing newborn DNA for 100 years without consent.  

On June 10, 2019, the Sixth Circuit Court of Appeals issued a favorable rulingCCHF president and co-founder Twila Brase released the following statement in response to yesterday’s newborn DNA announcement in Michigan:“We applaud yesterday’s federal appeals court ruling on retention and use of newborn DNA. The Sixth Circuit Court of Appeals recognized the fundamental and Fourth Amendment rights of parents to protect their children’s DNA from state retention, transfer to a biobank, and long-term storage and remanded it back to the federal district court ‘for further proceedings consistent with this opinion." 

On July 29, 2021, the U.S. District Court ruled in favor of parent rights noting a violation of the 14th amendment right to direct the care of their children: "[S]ome Plaintiffs are unaware of the seizure or their ability to end the seizure, that is, to request the destruction of the DBS. Other Plaintiffs declined to particpate in research, but their DBS were still retained. State Defendants fail to offer a valid reason for the State to retain the DBS when a parent has declined to participate in research. To the extent that some DBS are required for a specified amount of time to retest tools or design new test cutoffs, State Defendants have failed to demonstrate why a 22-year retention period is reasonable."  To read the ruling, click here.