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Dr. Robert M. Jacobson: Restore state's ability to save newborn screening data

As pediatricians, we are committed to doing everything in our power to protect and improve the health of infants and children. For this reason, we implore legislators to vote for a bill that would restore newborn screening in Minnesota — an issue that impacts nearly every baby born in the state.

Newborn screening involves simple tests before babies leave the hospital to determine whether they are at risk for more than 50 serious but treatable disorders, such as phenylketonuria, sickle cell anemia and cystic fibrosis. Left untreated, these diseases can lead to chronic illness, physical disability, intellectual disability or even death. Since its inception more than 50 years ago, Minnesota's newborn screening program has saved the lives of more than 5,000 children.

Many medical experts recommend state health departments save newborn screening blood spots and test results indefinitely to assure proper diagnosis, timely follow-up and reanalysis. After all, there shouldn't be an expiration date on important medical information. The ability to access and reference newborn blood spots is critical in cases of missed or delayed diagnoses and helpful in cases of unexplained death.

Unfortunately, because of a law passed in 2012, Minnesota has become one of few states to destroy newborn screening data soon after birth, putting babies and families at risk. Our once nation-leading newborn screening program was changed in response to perceived privacy concerns, but represents a major defeat for children and families.

Just ask Stacy Nugent, a Minnesota mother whose seemingly healthy and spunky little girl died suddenly and inexplicably at 25 months, shortly after her blood sample was destroyed. The sample could have revealed a rare, hidden disorder that would have offered a sense of closure as well as critical health knowledge that could benefit others in her family.

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Instead, Stacy is left without any answers and can't help but worry whether her second child will suffer from the same, unknown condition.

Another example is Lindsay Hill, who needed her son's newborn screening blood sample re-analyzed to determine whether he had a certain infection at birth that may have contributed to his hearing loss as a toddler. But it was too late. The sample had been destroyed by his second birthday, along with the ability to confirm the probable cause of his hearing loss.

The destruction of newborn screening data is not something to be taken lightly. A newborn's blood spot provides a unique overview of his or her health at birth. It contains a variety of biological markers that can be helpful in identifying and treating certain diseases that may or may not be apparent right away. Once a newborn blood spot is destroyed, it can never be recovered or replaced.

In addition to benefiting individual families, long-term storage of newborn screening data provides the basis for quality control and new test development. The lack of available stored blood spots has delayed the addition of at least one new test in Minnesota. Infants die because of these delays. An adequate number of stored blood spots is needed to ensure the accuracy of existing tests and develop new tests for rare diseases that can save even more babies. This becomes a challenge when data is destroyed in a matter of weeks.

Of course, data privacy is extremely important, and there are many safeguards in place that prevent unlawful access to individual data. Moreover, parents with privacy concerns have the option to pursue private newborn screening, refuse testing altogether or decline to have their child's blood spots stored.

We cannot afford to simply throw away newborn screening data by default. The costs are too great to Minnesota's families and population as a whole. In a recent report to the state Legislature, MDH concurred, and stated that "maintaining the current law will be detrimental to the program and will result in harm to Minnesota children and their families."

Fortunately, legislators have the opportunity to restore Minnesota's newborn screening program and save as many lives as possible. No child should have to suffer or die from a condition that can be easily detected at birth.

This bill — HF 2526 and SF 2047 strikes the right balance between the desire to protect medical privacy and the need to preserve critical health information. We applaud Reps. Kim Norton and Tina Liebling, both from Rochester, for their support of the bill, and we urge their colleagues to follow suit.

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Dr. Robert M. Jacobson is 
president of the Minnesota Chapter of the American Academy of Pediatrics
.

Opinion by Dr. Robert M. Jacobson
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