Abstract

Biomedical science is usually framed for the public in terms of its “promise.” When a breakthrough results from scientific inquiry, that promise is translated into a hope for a cure. The “promise” of such advances in biomedical research can have a paradoxical effect. In the case of pediatric neuromuscular disease, rather than reducing suffering, the expectation of cure can be a burden—both physically and emotionally—for affected children and their families. If a family expects a cure, it is likely to do everything possible to help the child live as long as possible, in the hope that the child will eventually receive it. I am not arguing that the appropriate response to the paradox of promise is to impede scientific progress. What is needed, however, is a broader conception of hope—one that values hope for a good day, a good quality of life, good relationships, or even a good death—alongside the hope for a cure.