Directing the Future of Gene Therapy in Cyprus: Breakthroughs, Subjunctivities, and the Pragmatics of Narrative

Abstract

Gene therapy is a technology that involves the introduction of therapeutic genes into humans for the replacement of mutations causing disorders. This article stems from research conducted with a thalassemia patients’ association in Cyprus and explores how political and epistemic uncertainty surrounding the promise of breakthrough in gene therapy is harnessed to particular objectives and narratives for the future. Anthropologists who survey the future largely address the manner in which people orient themselves in conditions of uncertainty through concepts of hope, waiting, patience, and endurance. Less attention has been paid to how people construct and deploy narratives and images of the future in a way that can bridge present immediacy and abstract futurity—a process I call directing the future. The concept I use to elucidate the connections between breakthrough and narrative is that of subjunctivity. In juxtaposing different positionalities that thalassemia patients in Cyprus adopt with regard to the promise of gene therapy, I show that subjunctivity is not only the ability to be receptive to transformation and the possibility of a world otherwise. The intersubjective and political processes out of which subjunctivity and narrative emerge are also the processes by which an otherwise undefined future becomes ordered, and certain images of the future attain more gravity and reality than others.

Cultural Anthropology in 2018: Captivity and Its Unruly Failures

“…Petryna (, 573) argued for the importance of “horizoning work,” which foregrounds runaway futures as objects of knowledge and intervention, an “exercise of the imagination (that) entails not only confronting present or near‐future shifts and seemingly inevitable points of no return, but also grasping horizons and bringing them to bear on [the?] present.” Kyriakides () similarly used the notion of the “subjunctive” to think about the future in times of uncertainty, inclined toward possibility, through analysis of gene technology for thalassemia patients in Cyprus. Mathews's (, 410) work with “through‐scapes” in Italian mountains revealed how the many “beginnings and coexisting histories” of the Anthropocene points to its “multiple futures.”…”

“…In a necessary dialectic, much work considered seepage or failures of containment through analytics of freedom (Furani ), the unruly (Cooper ; J. Fisher ; Scherz , 108; Stoetzer , 302), zaniness (Degani ), play (Rea ), transgression (Muir and Gupta ), porousness (Bjork‐James ), madness (Nuhrat ), rupture or breaking open (Kunreuther ; Kyriakides ; Ofstehage ; Saleh ), queering (Heywood ; Shirinian ), invasion (Sherouse ), excess (Gershon ), or contagion (Kivland ; Luna ; Rubin ; Rubinstein et al. ).…”

Waste to energy:

“…Thinking renewal from these places can train our eyes on the way that past conditions occupy the future, setting limits on the plausible. As anthropologists increasingly take up the future as an object of analysis (Adams, Murphy, and Clarke ; Appadurai ; Bryant and Knight ; Feldman ; Guyer ; Jasanoff ; Kleist and Jansen ; Kyriakides ) and as an existential problem (Boyarin and Land ; Masco ; Oreskes and Conway ), we would do well to attune ourselves to the subjunctive's ambivalence—and, indeed, to the many future orientations that shape our politics. Moreover, attending to this multiplicity is a particularly urgent task at a time when the future might be said to be the object of environmental and political anthropology.…”

“…Grammatically, it allows speakers to articulate futures that “might've been,” to compare multiple, composite prospects and to conjure things that are “not yet” (Bloch ) as though they were. Many anthropologists view this indeterminacy as cause for celebration (Holbraad, Pedersen, and Viveiros de Castro ; Turner ; Wagner ), but in practice the subjunctive brings order to uncertain futures, giving some possibilities more weight than others (Kyriakides ). In Curtis Bay subjunctivity took shape within a discourse of renewal that disciplined the possible by making past developments the template for future ones.…”

Tactics of association

“…The social integration of thalassaemia in Cyprus and the alliance with the Cypriot Orthodox Church allowed the PTA to gain a stake in Cypriot healthcare politics and decision‐making. At the same time, the success of the prevention scheme implies that the PTA must constantly strive to secure its position in Cypriot thalassaemia politics, since the current healthcare system is geared towards preventing future births, rather than treating existing patients (Kyriakides ).…”