Imminent transformation
, promise of in genetically transmitted diseases
“In the history of disease – and, as we have seen, in the histories of TSD, CF, and SCD – this vision of standing ‘on the threshold’ has emerged repeatedly, nurtured by innovators and entrepreneurs and intertwined with the hopes, ideals, and fears of different patient groups and medical communities in ways that are uplifting but also deeply troubling. The dream of imminent transformation is an integral part of the ideology of the modern medical sciences, of which genetic medicine is a part. . . . The recent histories of Tay-Sachs disease, cystic fibrosis, and sickle cell disease unearth often hidden dimensions of the promise of breakthrough medicine: the conflict between the cultural allure of the idea of imminent transformation and the realities of what can be delivered to patients; the unintended consequences of experimentation and innovation; and the ways in which scientists, business interests, and social commentators capitalize on this cultural motif in order to draw attention to their respective enterprises, even when their ventures are speculative in the extreme” (Wailoo III, 166, 167).