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Minnesota Court Rules on Newborn Screening
Last month, the Minnesota Supreme Court ruled that state health programs conducting newborn screening can no longer store the obtained blood samples for future research without parental consent. The decision in the two-year-old case is considered a significant victory for privacy advocates in Minnesota, and a major blow for the Department of Health, and their screening program. The basis for the decision was the state’s Genetic Privacy Act, passed in 2006, which regulates usage of genetic information. The court determined that blood samples taken from newborns falls under protection of the Genetic Privacy Act, and thus requires written parental consent. The Minnesota Department of Health will still be able to do initial screenings of the samples for medical interventions, but must destroy the sample if consent for future research is not granted.
Many individuals involved in bringing the lawsuit expressed frustration they weren’t told that the samples might be stored, and later used for research. Blood samples can be viable for research long after being drawn, and some worried what the state could use them for in the future. Privacy advocates maintain that most parents will choose to opt-in to allow future testing on newborn samples, thus maintaining possible benefits – but others aren’t so sure.
Minnesota is renowned for having one of the best newborn screening programs in the country. In 2001, the state tested for just five disorders, but by 2006 the program increased to cover 53. Today, Minnesota is one of a few states to test for every condition recommended by the American College of Medical Genetics; but there is concern the new ruling could have negative implications for the program. While privacy advocates are hopeful participation will remain high, others worry reduced contribution of samples will hamper research – possibly interfering with important interventions to save newborn lives. Minnesota Health Commissioner Dr. Ehlinger announced, after the ruling, that the department will investigate possible damage to the newborn screening program resulting from the new restrictions.
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