Do-it-yourself hormones: constructing credible knowledge in an online transgender forum

Abstract

On the continuum of patient participation between ‘‘informed patients'’ and ‘‘patients in control’‘, DIY pharmaceuticals are considered the most radical because they are produced outside regular medical professional and regulatory contexts. While some see DIY pharmaceuticals as an important contribution to making pharmaceuticals more accessible, others are concerned because they circumvent established procedures for assessing safety and efficacy. We studied a particular case of DIY pharmaceuticals: citizen drug developers who enable access to hormone therapy in transgender health care through the home production of hormones. By studying an online community of DIY hormone producers, we aimed to gain insight into how they strive to develop knowledge practices that are credible and safe. Theoretically, we drew from science and technology studies scholarship on knowledge credibility and patient participation in knowledge production. We relied on a qualitative study of an online forum to generate our data. The analysis shows how citizen drug developers constructed and performed standards of safety and efficacy in sharing knowledge within their community and how these standards were ensured. DIY pharmaceuticals can be an unconventional but important pathway for citizen participation in biomedical knowledge production, employing strategies for performing credible knowledge outside formal laboratory spaces and in the absence of external supervision.