Talk:Newborn screening

The above template was added without the promised discussion on the talk page. Please add discussion: newborn screening is carried out in nations with adequate health care systems, not those with inadequate health care systems, so your ideas on how to expand discussion of newborn screening to areas in which it is not carried out would be most enlightening. - Nunh-huh 02:13, 20 Oct 2004 (UTC)

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Nice article start. What is tale of 2 zacharys? I am guessing it is a story of 2 children with the same obscure metabolic disease, one of whom was born in a state that screened and the other born in a state that didn't screen for it and the latter suffered the effects of the disease while the screening detection allowed the second to be treated early. I am assuming the story is being propagated by an advocacy group trying to persuade a state to expand its mandated screening list? I suppose we could make up such a story, which may have been invented anyway by a reporter or advocacy group, but I don't think it's worth a separate article. Why don't we just explain why the states don't all do the same tests and what some of the political controversies are? If I am completely off base in my guesses, please outline or reference the story. Alteripse 10:36, 1 Jul 2004 (UTC)

No. You've got it exactly right. Let me dig up a couple of links--it's a true story unfortunately. You're right, it's probably a paragraph in this article, not an article of its own. Not sure which group is publicizing it, but it's probably someone. jengod 17:27, Jul 1, 2004 (UTC)

A Drop of Blood Saves One Baby; Another Falls Ill (Wall Street Journal {PDF})

Missing the Sign: Lack of Standardized Testing Leaves Some Newborns at Risk (ABC News)

reason for reversion

Anonymous contributor changed text to: "would anyone be reluctant to support the new, expanded screening programs? As the number of diseases included within the screening panel has increased, the cost to follow up potential positive cases has risen dramatically. If one assumes that state budgets for child health are constrained and finite, dollars spent on additional testing for false positive screen results exceed the costs saved by identifying a true positive cases and reduces resources available to other potentially lifesaving programs such as care for the uninsured or liability insurance for infant immunizations. The issue may be determined by juries deciding whether hospitals must routinely offer expanded newborn screening or risk multimillion dollar malpractice verdicts. Can another US$15-50 for each newborn infant be added to the cost of care or obtained from the state legislatures?" The problem with this is that it makes claims that are more specific for the cost with no back up evidence. The fundamental problem is not an increasing cost for false positives, but our expanding capacity to detect ever rarer diseases. The math for a break-even program has to show that cost saved for hospital or institutional care prevented, and that person's potential productivity will pay for the costs of testing X thousand babies at Y dollars apiece (including of course dealing with false positives). The math is very favorable for the relatively common and fairly treatable diseases like hypothyroidism and galactosemia, but as the disease gets rarer, or the treatment gets less effective or more expensive, the math becomes a net cost. We can certainly advocate that our society privilege children with these diseases in a way that it does not for many more common diseases, but we at least need to examine both the economic and social justice issues openly before simply demanding it as a state service. Your changes focusing on false positives miss this important point. Also, I think the costs for extended testing already in the article are more accurate, but am open to evidence on all these points. Please become a named user and we can discuss it. alteripse 00:24, 30 May 2005 (UTC)

Paragraphs removed

I received a complaint on my talk page about the same issue Alteripse mentioned above. (I didn't author the content in question, but I did make the most recent change to the page, which presumably is why the anon contacted me.) I've looked at the paragraphs, and I agree that they seem unencylopedic. I've moved two paragraphs from the article to below, in case anybody wants to argue for their re-inclusion. --Arcadian 01:45, 5 January 2006 (UTC)

Newborn screening tests have become a subject of political controversy in the last decade. It is difficult to resist the appeal of screening when a single child injured by a treatable disease can be shown to the news media and legislature. A prime recent example is the so-called "tale of the two Zacharys." Two California babies, Zachary Wyvill and Zachary Black, were both born with Glutaric acidemia type I. Wyvill's birth hospital only tested for the four diseases mandated by state law, while Black was born at a hospital that was participating in an expanded testing pilot program. Black's disease was treated with diet and vitamins; Wyvill's disease went undetected for over a year, and during that time the damage from the enzyme deficiency became irreversible. Birth-defects lobbyists pushing for broader and more universal standards for newborn testing are using the tale of the two Zacharys as powerful persuasion.

Why would anyone be reluctant to support the new, expanded screening programs? As the number of diseases and their rareness has increased, the cost to screen each infant and the cost to detect each case has risen dramatically. If one assumes that state budgets for child health are constrained and finite, dollars spent detecting the 1-in-a-million diseases exceed the costs saved by treating it and reduce resources available to other potentially lifesaving programs such as care for the uninsured or liability insurance for infant immunizations. The issue may be determined by juries deciding whether hospitals must routinely offer expanded newborn screening or risk multimillion dollar malpractice verdicts. Can another US$50-100 for each newborn infant be added to the cost of care or obtained from the state legislatures?