Michigan has added two tests to newborn screening requirements for hospitals and doctors’ offices as part of Newborn Screening Awareness Month. The tests are the first to be added since a federal appeals court ruling on the state’s retention and use of newborn DNA.
“This fall, a test is being added for X-linked adrenoleukodystrophy (X-ALD),” Michigan Health and Human Services (MDHHS) stated in a press release.
“This disorder most severely affects males, although females can be carriers and develop some symptoms as adults. Males with X-ALD may develop behavioral problems, learning difficulties and muscle weakness. Specialized treatment can help those with X-ALD live the healthiest lives possible.”
Currently, Michigan tests newborn DNA for 54 genetic disorders. Most of these keep the body from processing certain nutrients such as amino acids. Some like Sickle Cell Anemia change hemoglobin, while others affect specific organs such as the Thyroid and Adrenal glands, or multiple organs as with Cystic Fibrosis.
The newborn “heel stick” places a few drops of blood onto absorbent paper. A lab performs all but two of the newborn screening tests on this sample, known as a “blood spot.”
Two non-invasive tests screen for hearing and heart failure.
Early testing allows preventive measures, but the state’s retention of DNA has involved some controversy when blood spot DNA storage was contested in the courts.
Citizens Council for Health Freedom, an advocacy organization for DNA privacy, reported on the June decision on Michigan’s case.
The Sixth Circuit Court of Appeals recognized the fundamental and Fourth Amendment rights of parents to protect their children’s DNA from state retention, transfer to a biobank, and long-term storage and remanded it back to the federal district court ‘for further proceedings consistent with this opinion.’
MDHHS newborn screening guide for hospitals includes an opt-out form for parents.
The MDHHS web page for BioTrust, the state facility that stores blood spot DNA, states that blood spots are “stored for up to 100 years unless a parent or grown child (18 years or older) opts-out. De-identified stored blood spots can be used for research. The choice to allow research use is yours to make.”
According to the MDHHS press release, approximately 7.2 million Michigan newborns have been screened since the start of Michigan’s Newborn Screening Program in 1965, identifying over 6,600 to date. Each year, around 275 Michigan babies – one in 410 births – are found to have a disorder detected by newborn bloodspot screening.
Canton resident Mike Finkel told MDHHS that newborn screening saved him from brain damage 30 years ago and has allowed him to pursue a career in medicine.
“Thanks to newborn screening, I was found to have a condition called phenylketonuria (PKU) and referred for early treatment at just a few days old,” said Finkel in the MDHHS press release. “Without this program, I would have surely suffered permanent brain damage. Instead, I am healthy and able to fulfill my lifelong dream of becoming a doctor.”
MDHHS has also approved adding a newborn test for Guanidinoacetate methyltransferase (GAMT) deficiency to its full list.
Implementation of the X-ALD and GAMT tests is in progress. A specific start date has not yet been announced.
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Abigail Nobel is a reporter for The Michigan Star.