Devices for Doing: Moral Judgment in Economic Evaluations of Newborn Genetic Screening

For decades, newborn children in the United States have been screened for a handful of rare genetic conditions as part of a public health protocol. In 2005, the American College of Medical Genetics (ACMG) recommended that states increase the number of screened diseases from roughly five to 54 separate conditions. World Health Organization guidelines established in 1968 proposed that economic cost should be taken into consideration by governments in adopting population screening of any kind (Wilson and Jungner 1968), but the ACMG did not pay attention to the economic dimension of newborn screening programs. In subsequent years, however, there has then been an explosion of cost-effectiveness analyses making the case that newborn screening is not only a good financial investment but also an effective health intervention. This paper turns a sociological lens on the corpus of economic evaluations of newborn screening and asks about the moral decisions that health economists make in constructing definitions for the ‘cost’ and ‘effectiveness’ of newborn screening, and how the introduction of economic devices for evaluating the cost of screening infants changes the policy landscape surrounding this issue. Drawing on literature in economic sociology and science studies, we analyze the history of economic evaluations in healthcare and economists’ attempts to adapt cost-effectiveness analysis to newborn screening as a case of scientific object formation. These objects can be thought of, we argue, as devices for doing.

In the wake of contentious science studies debates about the ‘performativity’ thesis and the power of economic knowledge, sociologists have continued to investigate the social importance of economic devices for quantifying and calculating various phenomena. Hirschman and Berman (2014) summarize much of this literature and distinguish between “devices for seeing,” which “allow us to perceive the world in new or sharper ways,” and “devices for choosing,” which “go a step further by establishing formal, rational procedures for making decisions” (Hirschman and Berman 2014:797). Citing secondary literature on quantification and health economics (Ashmore, Mulkay, and Pinch 1989; Porter 1995; Sjögren and Helgesson 2007), they explicitly indicate that devices for producing knowledge about health, such as cost-benefit analysis and Quality-Adjusted Life Years (QALYs), are devices for choosing.

In the case of newborn screening, however, economic evaluations are not imagined strictly as prescriptive devices for making decisions about healthcare, but rather these devices serve to reinforce the decisions that public health officials have already made by adding favorable economic analyses to the other kinds of evidence that newborn screening programs should be expanded. The cost-effectiveness analyses that economists have used to evaluate newborn screening programs thus present us with another category of devices—devices that are used for doing something. If we think of economic evaluations of newborn screening as devices for doing, a new analytical landscape opens up. We can decenter the role of economists and economic ideas as causal agents in the production of policy knowledge, and instead focus on the ways in which these economic policy devices are sometimes mobilized to produce justifications for policies post-factum. In this paper, rather than asking “do economists make policies?” (Hirschman and Berman 2014), we look at moral judgments about what constitutes ‘cost’ and ‘effectiveness’ and how this leads economists to justify or qualify decisions about health policy that have already been made.

Similar to a number of other economic devices, cost-effectiveness analyses that justify the expansion of newborn screening programs are “largely improvised and adapted to the tasks and materials at hand” (Miller 1998:619)—in these cost-effectiveness analyses, values are often constructed and assigned on an ad hoc basis. This is because economists, in the transition from thinking about health interventions in the abstract to focusing on a specific technology such as screening for newborns, have encountered a series of data issues that problematize their ability to stick to analytical guidelines (Langer, Holle, and John 2012:305). Researchers have nonetheless persisted with their efforts to evaluate the cost-effectiveness of newborn screening, producing results that appear authoritative (because they follow quasi-official analytical guidelines) yet remain uncertain (because much of the data has to be assumed into existence by expert opinion).

This tension between authority and uncertainty  that characterizes cost-effectiveness research on newborn screening reflects a common theme in the history and sociology of science: the drive to formalize phenomena through numbers reduces the need for experts, but experts are also required to create and decipher numbers (Porter 1995). While at first glance cost-effectiveness analyses of newborn screening programs might seem like an obscure site at which we can observe this tension, it is precisely the presence of these strange bedfellows—economics and health, cost and effectiveness, etc.—that reveals the paradoxes of moral judgment at the heart of the seeming “mechanical objectivity” (Porter 1995) of economic evaluations. While economists using these devices to assess newborn screening programs believe themselves to be doing something useful by improving the objectivity of the decision-making process, our study of the details and uses of cost-effectiveness analysis in this domain reveals that it is shot through with subjective decisions at every stage.

References:

Ashmore, Malcolm., M. J. Mulkay, and T. J. Pinch. 1989. Health and Efficiency : A Sociology of Health Economics. Milton Keynes [England]; Philadelphia: Open University Press.

Hirschman, Daniel and Elizabeth Popp Berman. 2014. “Do Economists Make Policies? On the Political Effects of Economics.” Socio-Economic Review12(4):779–811.

Langer, Astrid, Rolf Holle, and Jürgen John. 2012. “Specific Guidelines for Assessing and Improving the Methodological Quality of Economic Evaluations of Newborn Screening.” BMC Health Services Research12:300–312.

Miller, Peter. 1998. “The Margins of Accounting.” European Accounting Review7(4):605–21.

Porter, Theodore M. 1995. Trust in Numbers: The Pursuit of Objectivity in Science and Public Life. Princeton, N.J.: Princeton University Press.

Sjögren, Ebba and Claes-Fredrik Helgesson. 2007. “The Q(u)ALYfying Hand: Health Economics and Medicine in the Shaping of Swedish Markets for Subsidized Pharmaceuticals.” The Sociological Review55:215–40.

Wilson, J. M. G. and Gunnar Jungner. 1968. Principles and Practice of Screening for Disease. Geneva: World Health Organization.