Other experts argue that forcing parents to participate in a public health program when the benefits of screening may not outweigh the emotional trauma is unfair. “So far what's come out of the Krabbe program is we've done a lot of screening, we've scared a lot of parents and we haven't truly helped a kid,” says Lainie Friedman Ross, an ethicist and pediatrician at the University of Chicago. According to the doctors who cared for the four New York infants with early-onset Krabbe, one family refused a transplant and the baby died; a second baby died from complications of a transplant; and a third child's affliction continues to progress despite a successful transplant. Only one baby has clearly benefited from screening. At three years, though, he is the size of a one-year-old and recently lost his ability to walk.
Ross fears that newborn screening is destined for another rapid, premature expansion as genome-sequencing technologies become inexpensive enough to use routinely. “With these new test platforms, there is the potential to test for hundreds of conditions we don't fully understand,” she says. “If adults can refuse these tests, why should we force them on children?”
Jeff Botkin, a medical ethicist at the University of Utah School of Medicine, has similar concerns. “I think people sometimes forget that we're talking about the state mandating these tests. That's a big deal. If we're going to say to parents, ‘You don't have a choice,’ there ought to be clear justification for doing a test. We shouldn't just add these things because we can.”
SCIENTIFIC AMERICAN ONLINE
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