Mundane Heroics: A Narrative Analysis of Gene Therapy in the Media
摘要
Gene therapies at long last seem to deliver the therapeutic sea change that the genetic revolution has promised all along. New treatments, such as Zolgensma, receive enthusiastic media coverage in an increasingly mundane display of the heroics of contemporary biomedicine. But what are the effects of the recurrent heroic narratives? In many ways, the modern bioscience sector has relied on the anticipation of great things from its inception (Cooper, Life as surplus: Biotechnology and capitalism in the neoliberal era, University of Washington Press, 2008; Kay, The molecular vision of life: Caltech, the Rockefeller Foundation, and the rise of the new biology, Oxford University Press, 1993), and these expectations can have considerable real-world consequences in the shape of promissory regulatory regimes (Hogarth & Martin, Regulation & Governance, 15(3), 969–986, 2021) and wider financial “fallout” (Whitacre, Social Science & Medicine, 344, 116598, 2024). This chapter adds an analysis of public media coverage to the study of the effects of expectations, in order to show how narratives can promote and shape these effects—for better or worse. It argues that great expectations do not arise in a vacuum, but are part of a wider discourse that emphasises the heroics of biomedicine at the expense of more balanced assessment of likely successes and outcomes. Relying on thematic narrative analysis (Riessman, Narrative methods for the human sciences, Sage Publications, 2008), this chapter reviews the promise of gene therapy in recent media coverage, and shows how the structure of the heroic tale can detract from alternative accounts of expectations and their cost. At the end of these stories, the hero has to win, all will live happily ever after, and every sacrifice will have been worth it. These narrative structures contain a set of expectations that may sound trivial, but that operate in each announcement regarding the research and development of these new medical treatments. Thus, they have structural effect, especially where it comes to the legitimation of sacrifice—a recurrent trope both in the expectation and in the reality of research.