[MMA News Now, Jan. 16, 2014]
The Minnesota Department of Health (MDH) reached a settlement Jan. 13 regarding the storage of blood spots as part of its Newborn Screening Program and as a result began destroying approximately 1 million blood spots.
The news was not taken well by the Minnesota Chapter of the American Academy of Pediatrics (MNAAP) and the MMA, which support the program and the use of blood spots for research.
“Saving newborn screening blood spots and test results are critical to saving lives," said Robert M. Jacobson, M.D., FAAP, MNAAP president. “Destruction of blood spots and data rob children and families of a tremendous, life-saving resource.”
The storage of blood spots came under fire in early 2010 when a number of families, with the assistance of the Citizen’s Council of Health Care (CCHC), filed suit against the state of Minnesota and MDH. The suit alleged that the department was in violation of the 2006 state genetic privacy act for the collection, storage, use and dissemination of newborn blood and DNA without first obtaining the written informed consent of the newborns’ parents.
As part of the settlement, the state agreed to pay court fees of nearly $1 million for the families who sued in addition to the destruction of the stored blood spots.
“It’s a very disappointing turn in this matter,” said Eric Dick, MMA’s manager of state legislative affairs. “An incredibly rich resource for the development of new tests and test quality assurance measures has been destroyed and will never again be available.”
After lower courts ruled against CCHC, the Minnesota Supreme Court agreed to hear the case. In November 2011, the Court ruled that the state of Minnesota could continue to screen newborns for various childhood diseases, but it could not store, use and disseminate blood samples for new test development, quality assurance, calibration, and other research activities without parental consent.
In 2012, lawmakers revised newborn screening laws allowing MDH to retain all negative blood spots for 71 days from the date they were received by MDH and all positive blood spots for two years. All blood spot test results (positive and negative) can be kept for two years then must be destroyed. Parents can consent to retain both the blood spots and test results for a longer period of time.
“The bottom line is that the information collected through newborn screening has saved more than 5,000 lives,” Jacobson said. "MNAAP will do everything in its power to reverse these changes, restore the program, and save as many babies as possible from unnecessary death, disability and impairment. Minnesota's newborn screening program has long been viewed as a national leader. But court and legislative action since 2011 has left Minnesota as arguably the weakest state in the nation. In fact, Minnesota is the only state that destroys newborn screening results soon after birth.”
“While much of the harm of this decision cannot be undone,” Dick said, “the MMA, MNAAP, and other program supporters will be at the Capitol this year strongly advocating for measures to restore the program to its former nation-leading status.”