Thursday, July 14, 2005

Newborn testing

On Tuesday, the Wall Street Journal had an article about newborn medical screening. It begins, “More and more states are requiring expanded testing of newborns for rare medical conditions, but a debate continues to rage over the ethical and legal issues involved.” A press release from the March of Dimes outlines the major issues at play concerning infant medical testing – testing normally done via a blood test on an infant’s heel. The March of Dimes says, “Expanded newborn screening is now required by law in dozens of states, but most infants still are not covered by the full panel of 29 tests recommended by experts, according to the March of Dimes 2005 state-by-state report card on newborn screening. “The March of Dimes recommends that every baby born in the United States receive screening for a uniform panel of 29 disorders that includes metabolic conditions and hearing deficiency. All of these disorders can be successfully managed or treated to prevent severe consequences, if diagnosed early.” (emphasis added by me). The WSJ article notes, “Michael Watson, the director of the American College of Medical Genetics, says it is important to have expanded and uniform testing across the country. In an increasingly mobile population, he says, parents ‘may have their first child in a state where 30 conditions are screened and then move to a state where three conditions are screened.’” But some experts are concerned about expansion of testing. According to the WSJ, “not everyone agrees that newborn testing should be sharply expanded right now. Jeffrey Botkin, a professor of pediatric medical ethics at the University of Utah, says that expanded testing carries its own risks because many doctors don't know how best to treat rare metabolic conditions and can hurt babies if their diagnosis is wrong. He also says the testing often takes place without parental consent, raising legal concerns.” Citing the heartbreaking story of a Virginia family, the WSJ makes a compelling argument for expanded testing. One family’s son is permanently disabled because of the failure to identify a disease through infant blood tests at his birth. The family’s second child has the same condition but it was identified at birth and through timely treatment she will lead a normal life. Louisiana is one of 15 states regularly offering fewer than 10 of the 29 recommended tests. This means that in Louisiana there are nearly two dozen different conditions that can be identified at birth and effectively treated – but Louisiana parents don’t get the benefit of that information. And the consequences can be extreme. For a list of states and the conditions for which they test regularly , check the box on the left side “More on Newborn Screening” and click on “a rundown of tests by state.”