More than two years after the Minnesota Supreme Court barred the state’s Department of Health (MDH) from retaining samples of blood used in newborn screening tests, MDH has reached a legal settlement that will result in the destruction of more than a million blood samples.
The newborn screening program in Minnesota has been in the spotlight for several years, as 21 parents had challenged MDH policies, citing privacy concerns around sample retention. According to the MDH and a number of researchers, the retained samples had been used for research into pediatric illness as well as in patient care.
The newborn screening tests use a small amount of blood to test for more than 50 diseases, both metabolic and inherited. The testing will continue, but since the Supreme Court’s ruling in 2011, the samples are only saved for 71 days. Samples can be retained up to two years if testing shows a suggestion of a potential genetic or metabolic disease. Parents are able to opt in to allow these samples to be retained, but otherwise the MDH must destroy their samples unless they’re able to shift to an “opt out” process down the road.
Mark Schleiss, M.D., director of the Division of Pediatric Infectious Diseases and Immunology, believes the change will have a significant impact on research and patient care.
“Losing these samples will result in decreased opportunity to learn more about pediatric illnesses, and could also make Minnesota significantly less competitive when it comes to research grants and projects,” said Schleiss.
Schleiss says the blood samples a great resource for families, as well, saying there were many times he and other doctors were able to use the information obtained from such samples to help understand a child’s illness, sometimes even years later.
“The concerning piece from a clinical standpoint is that this ruling takes away opportunities not just for research but for families to have answers to questions about conditions that affect their children,” said Schleiss.
Schleiss is pleased the screening program is continuing, calling it a life-saving test for many babies. According to the Star Tribune, more than 5,000 babies were able to receive quick treatment for disorders and illnesses found in the screening.
Schleiss is hopeful more education can be done and parents understand and choose the opt-in process.
Read more
State must destroy 1 million newborn blood samples – Star Tribune
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