Academic journal article The Hastings Center Report

Ethics, Evidence, and Cost in Newborn Screening

Academic journal article The Hastings Center Report

Ethics, Evidence, and Cost in Newborn Screening

Article excerpt

When deciding what disorders to screen newborns for, we should be guided by evidence of real effectiveness, take opportunity cost into account, distribute costs and benefits fairly, and respect human rights. Current newborn screening policy does not meet these requirements.

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In 2000, a child named Ben Haygood died in rural Mississippi from a rare, inherited, undiagnosed metabolic disorder known as medium chain acyl-coenzyme A dehydrogenase deficiency, or MCADD. Children with MCADD seem healthy, but if they go without food for too long, they can suddenly become seriously ill, and they may even die. Children diagnosed with MCADD must avoid prolonged fasting. If Ben had been tested for MCADD as a newborn and his parents had known to take this simple precaution, perhaps his life could have been saved.

In the United States, state-based public health programs screen all infants shortly after birth for selected conditions that can have serious health consequences if not identified and treated very early in life. After Ben died, his father became a passionate advocate for expanding Mississippi's newborn screening program to add MCADD and other disorders. Within a few years, the Mississippi legislature had passed the Ben Haygood Comprehensive Newborn Screening Act, the state's test panel had gone from only five disorders to forty, and a three-person team had been created in each of nine state districts to manage the cases of children with abnormal results. (1) Most newborn screening program funding came from a fee for each newborn screened; to help pay for the expansion, the state doubled the fee to seventy dollars. This meant that a substantial share of the resources for expansion came from Mississippi's Medicaid funds, since Medicaid covers more than half of Mississippi births. (2) In the first year of expanded screening, three cases of MCADD were identified along with twelve cases of other new disorders, out of a total of 116 newborn screening diagnoses. (3)

Around the same time, according to a New York Times article, Mississippi experienced a worrying change in overall infant mortality. (4) The state's rate had long been above the national average but had recently been falling. Between 2004 and 2005, however, it increased, especially among blacks, and in 2005, 481 infants died, sixty-five more than in the previous year.

A new governor had taken office in 2004 with a promise to keep taxes steady and bring Medicaid costs down. Medicaid eligibility requirements were tightened, and some programs were cut. Were the changes in Medicaid a factor in the increase in infant deaths? Could infant lives have been saved if the state had increased the availability of Medicaid services and provided state funds to subsidize transportation for low-income rural black women so they could access prenatal care more easily? It is hard to know; however, the Times article points to the dramatically lower infant mortality rate achieved in one very poor Mississippi county from 1991 to 2005. (5) The county's rate fell sharply after a private charity began providing intensive in-home visits using local women as counselors and busing pregnant black women to pre-and postnatal classes.

Our goal here is not to single out Mississippi for criticism or to focus on a specific pair of alternatives for improving the health of children. Newborn screening, home visits, and prenatal care are all means to the end of helping children. There are many others as well. There could be a systematic effort to identify children with asthma and manage the condition better, especially in poor children, who often end up in emergency rooms in asthmatic crises. There could be efforts to reduce smoking by pregnant women, increase car seat use, or prevent childhood accidents. We do not know which of these programs would produce the greatest benefits for children--but that ignorance is itself a major problem. The problem is heightened when resources available for children's health, such as Medicaid, are decreased or fail to keep up with growing need. …

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