Pursuing a “normal” life of food: Families’ experiences of pediatric food allergy clinical trials

Although food allergies have been on the rise over the past twenty years, there are currently just two products approved by the United States Food and Drug Administration (US FDA) for this condition, and one treats peanut allergy only. For families seeking medical intervention for their children's food allergies, many turn to clinical trials, which have proliferated in the last decade. Indeed, the entry of the pharmaceutical industry and the availability of clinical trials are rapidly reshaping the food allergy landscape. As a result, many families now perceive clinical trials as a way to “do something” other than merely avoiding the foods to which their children are allergic. Based on ethnographic research, including 124 semi-structured interviews with families and other key stakeholders, this article describes parents' and children's experiences in these clinical trials. It describes how the families that pursue clinical trials for their children's food allergies are typically affluent, and the “normal” life they hope to achieve for their children reflects idealized and privileged notions of normalcy. Analyzing my findings through the lens of stratified biomedicalization, I argue that affluent parents willingly accept a form of biomedicalization of their children that involves exceptional, and sometimes traumatic, clinical trial experiences as they pursue the elusive normal life and future they envision for them.