Academic journal article The Hastings Center Report

Every Child Is Priceless: Debating Effective Newborn Screening Policy

Academic journal article The Hastings Center Report

Every Child Is Priceless: Debating Effective Newborn Screening Policy

Article excerpt

To the Editor: "Ethics, Evidence, and Cost in Newborn Screening," by Mary Ann Baily and Thomas H. Murray, and "Expanding Newborn Screening: Process, Policy and Priorities," by Virginia Moyer, Ned A. Calonge, Steven M. Teutsch, and Jeffrey Botkin (May-June 2008) raise significant questions, but I will identify only a few that to me appear most important.

Baily and Murray are very critical of the decision-making process reflected in the report issued by the American College of Medical Genetics, but some of their comments suggest that they have not carefully reviewed the report, which is over three hundred pages. For example, although the experts who drafted this report felt that benefit from newborn screening should be considered more expansively, all of the conditions recommended by the ACMG report for the core panel are serious conditions, and all are judged to benefit from specific, traditional treatments. No condition was added because of the expanded benefit espoused in the group's recommendations. In reaching these conclusions, the broadly based panel reviewed what published information exists (due to the rarity of the conditions), as well as expert opinions. It is particularly unfortunate that these authors have singled out the expansion of the excellent newborn screening panel in Mississippi and positioned this discussion in a fashion that could suggest that this expansion might have been related to the increase in infant mortality because scarce resources have been allocated to newborn screening.

Baily and Murray's review of the very complex cost accounting of newborn screening is not enlightening. One cannot put a price on the life of an infant saved by early identification and treatment of MCADD deficiency. Infants with other illnesses who are not identified as newborns and become seriously ill prior to diagnosis are commonly hospitalized and generate enormous expenses for treatment. And although not well documented, the long-term follow-up treatments of diagnosed children are probably similar to the costs of repeated hospitalizations of undiagnosed infants under treatment--excepting, of course, those who die early without treatment.

Baily and Murray bring up the often-discussed issue of children who "may even be harmed by unnecessary interventions." However, those of us in the field have long felt that there is little evidence of serious harm to infants who are unnecessarily treated. A recent article in Pediatrics (Jeffrey P. Brosco et al., "Adverse Medical Outcomes of Early Newborn Screening Programs for Phenylketonuria," July 2008) substantiates this opinion.

The authors further fail to recognize that even at the time they wrote their article, the newborn screening panels had already been brought closer into harmony with the panel suggested in the ACMG's report, which was also recommended by the Secretary's Advisory Committee on Hereditary Disorders in Newborns and Children, as well as the American Academy of Pediatrics.

There is a line of thinking that holds that we should not begin newborn screening until all of the pieces of our health care system are in place. I certainly agree that we should strive for this goal, but in our current health care environment, requiring this would mean that we provide essentially no preventive health care.

I personally object strenuously to Baily and Murray's suggestion that families play too large a role in advancing newborn screening. We all agree that such programs should be based on the best evidence of benefit, but no group has a greater right and responsibility to work on behalf of children with these serious conditions than their families, who know firsthand both the burden and the benefits.

I find the article by Moyer and colleagues surprising since it is presented "on behalf of the United States Preventive Services Task Force." The federal mission statement says that the Agency for Healthcare Research and Quality supports health services research initiatives that seek to improve the quality of health care in America. …

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