ST. PAUL, Minn. (AP) — Minnesota would be permitted to retain blood samples from newborn babies under a bill that passed the state House Thursday, potentially restoring a valuable research tool despite privacy concerns from some parents.
The bill that passed 69-58 would let parents opt out of having their child's sample kept. Lawmakers also added an amendment banning sale of the samples and related test results and data. The bill now moves to the Senate.
Supporters say keeping the samples can save lives by helping researchers develop tests for new disorders. Opponents say they amount to giving ownership of one's DNA to the government.
Rochester Democratic Rep. Kim Norton's proposal comes in the wake of a 2011 Supreme Court ruling and subsequent settlement that resulted in the destruction of more than 1 million blood samples stored under the Minnesota newborn screening program.
During floor debate, Norton called the current situation "a tremendous barrier to new test development."
"The current law is not working," she said. "We can save many more lives."
Twila Brase, president and co-founder of Citizens' Council for Health Freedom, a nonprofit organization in St. Paul that advocates for patient privacy, said she was disappointed.
"This is about who owns a baby's DNA; who has first dibs on it; who has primary control over it," said Brase, who also is a registered nurse specializing in public health. "Our genetic privacy hangs in the balance."
Begun in 1965, the program tests blood drawn from infants within the first 48 hours of their birth. Researchers examine that blood for more than 56 maladies such as congenital heart disease and sickle cell anemia.
But a group of families sued in 2009, arguing they never consented for the blood to be used that way. The Minnesota Supreme Court ruled in 2011 the state could not store blood without consent. State Department of Health officials began eliminating the saved blood in January.
Dr. Robert M. Jacobson, president of the Minnesota Chapter of the American Academy of Pediatrics and a pediatrician at the Mayo Clinic in Rochester, said in an email that newborn screening is critical to pediatric care. Missed, delayed or false diagnoses are what make preserving the screening data critical, Jacobson said.
"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," Jacobson said. "Restoring the program protects the health of children born now and in the future."