In lieu of an abstract, here is a brief excerpt of the content:

160 Newborn screening is clearly changing the lives of parents and children in significant, complex ways. In the public domain, however, these complicated aspects of NBS are rarely discussed or considered. Instead, the relationships parents have with NBS are represented as exquisitely simple, and their attitudes about it are summarized as unambiguously enthusiastic. When questions about the impact of screening are raised at all, it is primarily academic clinicians , social scientists, and bioethicists who articulate them. But commentators, advocates, policymakers, and the media usually depict parents as having uniformly positive experiences with NBS, and negative ones in its absence. Parents are also represented as “almost unanimous” in their enthusiasm for “rapid expansion of newborn screening” (President’s Council on Bioethics 2008, 62).1 This chapter departs from the preceding three by moving away from a strict focus on the qualitative dimensions of newborn screening and exploring instead why there has been so little space available, in either public consciousness or policy debates, to “take on board” more complex understandings of how NBS touches people’s lives (Frank 2006b, 424). Specifically, I examine how a subset of vocal advocates—many of them parents of children with genetic disorders— have shaped a powerful, univocal discourse around NBS that I call the “urgency narrative.” This chapter draws on a set of intensive interviews with program administrators in forty-eight of the fifty states (home to 99 percent of the U.S. population), a comprehensive content analysis of NBS media coverage, and additional insights from the parents I interviewed.2 Because parent advocates have played a significant role in shaping the public discourse around screening, I spend considerable time here discussing A House on Fire How Private Experiences Ignite Public Voices Chapter 5 A House on Fire 161 their initiatives. Most often, these are parents whose children have died or become disabled because of a treatable disorder that went undetected. The pain they have endured is enormous beyond quantification or comparison. Their tireless advocacy to spare others such suffering is testament both to their gigantic heart, and to their formidable ingenuity, tenacity, and dedication. Without question many current beneficiaries of NBS are in the debt of these parents, and of parents who had successful screening experiences and then dedicated their energy to the advocacy cause. The discussion that follows here is in no way intended to diminish either the pain or the good hard work of these parents. Rather, it is offered with the hope that a more careful parsing of the complex issues surrounding the new NBS will help us all better understand the implications of how public discourse about NBS is shaped and reshaped, thereby facilitating more robust and more democratic parental participation in the policy process—an aspiration I explore more fully in chapter 6. I believe this is a goal all advocates must ultimately share, just as they must share a perpetual struggle for influence, legitimation , and voice in a system which structurally disadvantages them (Hoffman 2006; Jewkes and Murcott 1998; Tomes 2006; White 2000). It is also a goal that I think suitably honors the lives of children, both living and deceased. When a Part Comes to Stand for the Whole NBS affects every parent, since the very fact of screening exerts an influence— however subtle—over the context of birth and the newborn period. As the new NBS continues to grow and screening shifts more fully away from its original focus, the stakes for every parent will continue to rise. The subset of people who receive news of an abnormal result includes families whose baby was completely false positive, as well as those whose child becomes identified via NBS as a carrier of a genetic disorder. It also includes those for whom abnormal test results do not directly correspond to an identifiable disorder; those who get a diagnosis that has no clinical manifestations; those who get a diagnosis for a condition that has little or no demonstrably effective treatment. And of course it includes the subset of families for whom NBS was originally intended: those whose child has an early-onset, serious condition that can be effectively treated with prompt and accurate diagnosis. This last group has long been the predominant face—and voice—of parents in debate and decision making about NBS in the United States. Certainly parent advocates are not the only drivers of NBS expansion: other critical factors include the “technological imperative”; interstate competition; the presence...

Share