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Minnesota House Passes Newborn Screening Bill

NEW YORK (GenomeWeb) – The Minnesota House of Representatives yesterday followed the Minnesota Senate's lead by passing a bill (SF 2047) that would undo the state's current newborn screening policy and would enable researchers to access test results indefinitely without specified parental or guardian consent.

Less than two weeks ago, the Senate passed the same bill, which would return Minnesota to a policy it held before 2011, when the Minnesota Supreme Court ruled that the state's health department was acting against the law by holding blood spots indefinitely.

That decision resulted in the Minnesota Department of Health being forced to destroy the blood spots from over 1 million children who were born before 2011. The current policy, which took effect after the court ruling, requires MDH to retain blood spots that test negative for 71 days and then destroy them, and to keep samples that produced abnormal results for 24 months before they are destroyed. The current policy also does not allow MDH to use the samples for research, public health studies, or to develop new screening tests, whereas the new bill would open these samples up for broader use by the research community.

The Newborn Screening Program Modifications bill's supporters say long-term retention of blood spots and test results offers researchers powerful tools for developing new newborn screening tests, and it has support from many in the research and pediatrics communities. Its detractors contend that the bill strips away individual genetic privacy and parental control.

The new bill allows parents to choose whether the spots will be stored, but it requires that they opt out, although they may do that at any time — and the child from which the sample has been taken may opt out after the age of 18. The bill also would require that parents receive more education about newborn screening and would allow the samples and results to be used in newborn testing and in public health studies if the parents provide consent.

The Minnesota Chapter of the American Academy of Pediatrics has lobbied on behalf of the bill, working to get its members to urge their state representatives to support its passage.

MNAAP said today that newborn screening saves many lives each year, but stressed the information from these tests also are valuable and useful for individual patients in certain cases.

"The data from these tests is also critical and should be preserved by default so that it's available to parents and providers in cases of missed, delayed, or false diagnoses," MNAAP President Robert Jacobson said in a statement. "This bill positions Minnesota to save as many lives as possible while upholding parents' rights to refuse testing, request destruction of test results, or both. Restoring the program protects the health of children born now and in the future."

The Citizen's Council for Health Freedom, a group that has fought against the bill on the grounds that it takes private information out of parents' hands, said today that the "opt out" approach only works if patients know that their baby's test results and DNA are being stored. CCHF said that in passing the bill the house ignored "all principles of property rights of newborns and of parental consent," and gives the state "default ownership of newborn DNA."

"The fact that our elected legislators would ignore not only our constitutional protection against search and seizure but also the 2011 State Supreme Court ruling that protected parental rights is not simply disturbing; it’s downright dangerous to the liberties of every Minnesotan."

The bill must now return to the Minnesota Senate for concurrence before it can advance to the Governor's office.