Academic journal article The Hastings Center Report

Evidence and Ethics

Academic journal article The Hastings Center Report

Evidence and Ethics

Article excerpt

Everyone agrees that access to health care is an ethical issue, particularly for children. The promise of newborn screening, of course, is that it promotes access: it identifies children with serious but treatable disorders and (if the program is complete) connects them to effective care. If access is an ethical issue, however, then so is cost-containment: one obstacle to providing access is that costs are out of control, and therefore (as David DeGrazia argued in these pages a couple of issues ago) it is imperative that we think about cost-containment. One problem with newborn screening according to two articles in this issue is that some of the tests now in use in some states--and recommended for use across the nation by a federally funded panel of experts--raise costs more than they promote access. In fact, these articles assert, these tests may actually impede overall access by spending limited resources.

To Bruce Lin and Alan Fleischman, physicians with the March of Dimes and authors of Another Voice (on the facing page), this position is wrong both about the constraints imposed by the cost problem and about the procedure for evaluating newborn screening. When it comes to the treatment of children with severe health problems, access is restrained by cost, they assert, only if state policy-makers have decided that it will be. Funds should be allocated to meet these very special health needs--full stop. And it's hard to allocate funds on the basis of evidence of effectiveness, they maintain, for the simple reason that the extreme rarity of many of these disorders means that effectiveness must be evaluated on the basis of a small sampling of case reports rather than population-based studies. …

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