The House of Delegates last week approved legislation that would save the state hundreds of thousands of dollars. But the savings comes with a terribly high human cost.
House Bill 216 would give the state a monopoly on mandatory screening for genetic and congenital defects in newborns. It contains a dangerous exception that would allow parents to opt out of such screening - and thus consign some unlucky newborns to lives destroyed by disorders that might have been treated if detected early.
According to the state Department of Health and Mental Hygiene, which requested HB 216, the bill's main purpose is to cut commercial labs out of the screening business. Giving the state a monopoly on screening would generate net additional revenue of more than a million dollars a year by 2013. But commercial labs are far from the biggest losers if the bill passes. It would codify a 50-year-old exception that allows parents, for any reason, to forgo screening for their newborns, ignoring future advances in genetic testing.
Newborn screening has been proved effective. With a few drops of blood from an infant's heel, dozens of metabolic disorders can be detected, some of which cause mental retardation and sudden death. Several can cause catastrophic harm that treatment, if begun promptly, can prevent. Phenylketonuria (PKU), for example, causes severe mental retardation unless detected and treated shortly after birth.
Advocates are not asking the state to require every possible test for every possible condition. We merely believe that all infants should be tested for metabolic disorders that cause severe harm and for which medical science has effective treatment. We also believe that parents should be told in advance about the test and be given the opportunity to raise their objections in an appropriate forum.
Do public health officials know how many newborns are falling through the cracks? State health officials testified that they did not know how many parents refused testing but estimated that it was about five per year. However, for 2005, the state Health Department reported to the National Newborn Screening Information System that 68,545 babies were screened out of 71,292 live births. There's a big difference between missing 2,747 babies and five. Moreover, for 2003, the Health Department reported that it screened 71,744 infants, even though Maryland had only 70,783 live births that year.
Advocates sent the bill to the American Academy of Pediatrics for analysis. According to the academy's James Pawelski, the bill's exception should have raised all sorts of concerns for lawmakers and Health Department officials. He added that the academy considers such exceptions in law to be bad public policy. The department agreed that the exception was not in keeping with its desire for universal screening, but failed to proffer an amendment to delete it.
Maryland may gain many thousands of dollars in revenue if this bill is enacted. But what about the millions of dollars it costs to institutionalize a profoundly retarded person for a lifetime because parents refused testing? Consider, too, the loss of the talents the person could have brought to the world, the nurturing and love he could have given to others, the solutions she could have found to pressing social problems.
Although 12 other states and the District of Columbia allow parents to opt out of screening for any reason, courts have ruled that a state has a right to require all babies to be screened for metabolic diseases. The Nebraska Supreme Court recently upheld a state law requiring that all babies have the screening, regardless of parents' religious objections to withdrawing a few drops of blood. The U.S. Supreme Court declined the parents' request to overturn the state court ruling.
The consequences of missing the diagnosis of metabolic diseases in even a small number of children can be devastating. Dr. Ruth Faden, executive director of the Berman Institute of Bioethics at the Johns Hopkins University, asks: "Is a public policy that grants parents the right to consign their children to a state of irreversible mental retardation morally acceptable? We think not."
Dr. Faden is right. The General Assembly should not allow parents to refuse metabolic screening of their newborns. The costs of doing so are too great.
Dr. Marc Mugmon, a cardiologist in private practice in Baltimore, is a clinical assistant professor at the University of Maryland School of Medicine. Lauren Dundes, an associate professor of sociology at McDaniel College, holds a doctorate in maternal and child health from the Johns Hopkins University.