Fisher Jill A
Department of Social Medicine and Center for Bioethics, University of North Carolina at Chapel Hill, Chapel Hill, NC, 27599-7240, USA.
Soc Sci Med. 2025 Aug;378:118085. doi: 10.1016/j.socscimed.2025.118085. Epub 2025 Apr 22.
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.
尽管在过去二十年里食物过敏情况呈上升趋势，但目前美国食品药品监督管理局（US FDA）仅批准了两种针对这种病症的产品，其中一种仅治疗花生过敏。对于那些寻求医疗干预来治疗孩子食物过敏的家庭而言，许多家庭转向了临床试验，在过去十年里这类试验激增。的确，制药行业的介入以及临床试验的可得性正在迅速重塑食物过敏的局面。因此，现在许多家庭将临床试验视为一种“有所作为”的方式，而不仅仅是避开孩子过敏的食物。基于人种志研究，包括对家庭和其他关键利益相关者进行的124次半结构化访谈，本文描述了父母和孩子在这些临床试验中的经历。它描述了那些为孩子的食物过敏寻求临床试验的家庭通常较为富裕，他们希望为孩子实现的“正常”生活反映了对正常状态的理想化和特权化观念。通过分层生物医学化的视角分析我的研究结果，我认为富裕的父母愿意接受他们孩子的一种生物医学化形式，这种形式涉及特殊的、有时甚至是创伤性的临床试验经历，因为他们追求他们为孩子所设想的难以捉摸的正常生活和未来。
