Thou Good and Faithful Servant

Lawmakers are stewards of social resources. A current debate—over screening newborns for genetic disorders—illuminates dilemmas of that stewardship that have particularly plagued bioethics. Recently in the Report, Mary Ann Baily and Thomas Murray told the story of little Ben Haygood. He died from MCADD, a genetic disorder that can make long fasting fatal.¹ Screening at birth would have let doctors alert Ben's parents. "After Ben died," Baily and Murray wrote, "his father became a passionate advocate for expanding Mississippi's newborn screening program to add MCADD and other disorders." Soon, the Ben Haygood Comprehensive Newborn Screening Act increased the number of genetic disorders covered by the state's program from five to forty and provided teams to follow up positive tests.

Is this a prudent and productive way to make public policy? Certainly it is understandable. Mr. Haywood knew that parents suffered and children died in ways newborn screening could prevent. He acted on his knowledge. The legislature knew that suffering and death could be prevented. It acted on its knowledge. Was it supposed to let Tiny Tim die?

Who could say yes? But was the legislature a good steward? In its first year, as Baily and Murray reported, Mississippi's expanded screening identified three cases of MCADD "along with twelve cases of other new disorders, out of a total of 116 newborn screening diagnoses." But "to help pay for the expansion, the state doubled the [screening] 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." Around this time, Mississippi's infant mortality rate had been increasing, "Medicaid eligibility requirements were tightened, and some programs were cut."

One county's infant mortality rate, however, "fell sharply after a private charity began providing intensive inhome visits using local women as counselors and busing pregnant black women to pre and postnatal classes." If resources spent screening had instead been spent on such a program, would more lives have been saved and more suffering averted? When legislators are confronted with the tragedy and passion of a parent like Mr. Haygood, such questions are painful and seem pointless. But if they are not asked, several anonymous Tiny Tims may die to save one whose story lawmakers hear.

The American College of Medical Genetics proffers a somewhat more systematic way to make screening policy.² Its "expert panel identified 29 conditions for which screening should be mandated. An additional 25 conditions were identified because they are part of the differential diagnosis of a condition in the core panel or are clinically significant and revealed by the screening technology but lack an efficacious treatment . . . or because there are incidental findings for which there is potential clinical significance."

The ACMG report is a stride toward more orderly stewardship, and most states have implemented a version of the report's proposals. But like Mr. Haygood, the ACMG has purposes and passions that lead it to see a world in which screening is indispensable. Its report does address the issue of cost and benefit, but in such a cautiously qualified way that it's hard to embrace its conclusions. Furthermore, the report enthusiastically says that "screening is more than testing. It is a coordinated and comprehensive system consisting of education, screening, follow-up, diagnosis, treatment and management, and program evaluation." How would a "comprehensive system" affect costs and benefits? Finally, the report does not ask whether there are yet more rewarding ends to which resources could be put.

In a recent white paper, the President's Council on Bioethics sees screening from yet another perspective.³ It finds the cost question harder than the ACMG. Few infants actually benefit: Of about four million babies screened annually, "about 5,000 are identified as having serious heritable disorders, most of which are, in varying degrees, amenable to treatment." And the "benefits and harms involved in each component of genetic screening" are "complex and elusive."

The white paper, however, is primarily interested in "ethical analysis" of screening. The white paper "[r]eaffirms the essential validity" of the "classical...