Rare But Deadly
Some simple, cheap blood tests could save thousands of kids' lives every year
Still, a recommendation from HHS will carry a lot of weight, coupled with increasing public demand as reflected in the state screening mandates. HHS has given grants to establish regional centers around the country to aid small and cash-poor states.
More tests. A greater problem is ensuring that every parent know what the Band-Aid on the heel means. Screening, after all, is not a diagnosis. It means there is reason to test further. "We'll be creating a lot of anxiety," says Lainie Ross, associate professor of pediatrics and clinical director of the MacLean Center of Clinical Medical Ethics at the University of Chicago. "Most parents are already scared out of their minds with a newborn."
And it's possible that increased screening will find children who have less severe disease and who might have lived healthy lives never knowing anything was wrong. One 2001 Australian study, for example, concluded that screening found children with lower risk of becoming ill. "MCAD is the perfect disease we should be testing for," says Ross. "Yet the data from Australia show that they're diagnosing a lot more kids now than historically. We may be creating this whole community of people who have a diagnosis, some of whom may never get sick."
And yet, as the Clines, Allens, and countless other parents can attest, there have been tragedies that technology can help avert. "You can imagine," says R. Rodney Howell, professor of pediatrics at the University of Miami School of Medicine and chair of the newborn screening expert group, "if someone says your new baby has MCAD and we can put the baby on a special program and he or she will do fine--you'd go ballistic if you had a baby die of that condition. There are not a lot of things we do that can make this much of a difference."
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