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
Comment on this article at ScientificAmerican.com/jul2012

3 Comments

1. 1. Geopelia 09:20 PM 7/2/12

   If a test picks up a serious and incurable condition,the kindest thing might be euthanasia. But that would be illegal in most countries, and the parents probably wouldn't agree, hoping for a miracle cure.
   Should doctors keep quiet about what they have discovered, in that case?
   
   Perhaps testing a foetus and abortion, rather than a newborn, might be better. But is it practical?

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2. 2. WeyrCat 10:40 AM 7/21/12

   I thought the same thing as Geopelia when I saw the description of the disease... a painful death before the age of 2? Euthanasia should be an option for these sad scenarios. Are we not condemning the child, and it's parents, to physical and mental torture by forcing them to ensure such a thing?

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3. 3. DontAgree 02:31 AM 8/1/12

   I think that euthanasia is a very naive point of view.
   None of you have ever had any experience with these diseases.
   WeyrCat said "Euthanasia should be an option for these sad scenarios"
   How is killing someone you love not a sad scenario?
   Yes these diseases are painful but many times if you have a good Dr. they can manage the pain well enough. You should watch this video about Judson Levasheff who had Krabbe Leukodystrophy and then tell me if you really think Euthansia is really the right answer.
   http://www.youtube.com/watch?v=JYCRQBsvtsE&feature=share

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