Creating an (ethical) epistemic space for the normalization of clinical and “real food” oral immunotherapy for food allergy

Abstract

Researchers and sociologists have argued the consequences of standardization vis-à-vis clinical practice guidelines are diverse and argue they should be explored empirically. Sociologists have also argued that “best evidence” for the development of clinical practice guidelines is not restricted to randomized controlled trials and that other forms of knowledge should be embedded in and inform CPGs. There is little research concerning how other types of knowledge are mobilized and taken up in CPGs. This article presents the results of an ethnographic investigation in Canada between 2015 and 2020 of the development of a clinical practice guideline for immunotherapy for food allergy. My research shows that immunotherapy has become the source of controversy regarding whether immunotherapy should be offered in the clinic or remain experimental and whether it should be offered using food or commercial products. I argue that the clinical practice guideline for oral immunotherapy reaffirms what has been previously noted by sociologists; guidelines can serve normative purposes and are not merely technical documents. This case study is unique as it demonstrates how guidelines can serve as “community-making devices” to consolidate “epistemic communities” through the explicit and formal mobilization of ethical principles alongside other forms of “traditional” evidence. The mobilization of a multi-criteria approach that included ethical principles was mobilized in part to counter the de-legitimization and peripheralization of clinical and real food oral immunotherapy.