March
31,
2022
Speaker:
Joanna Kempner, PhD
Department of Sociology
Rutgers University
Federal regulations mandate that investigators limit their clinical trials to pre-approved, standardized drugs to assure reliable results. Sometimes, however, unauthorized investigators) develop therapeutic protocols for the use of drugs in the underground, beyond the reach of federal regulators. This article investigates how unauthorized investigators engaged in “collective experimentation” (Latour 1999) standardize drugs given the difficulty of obtaining “laboratory-grade” pharmaceuticals by drawing on a case study of Clusterbusters, a loose network of people with cluster headache, whose collectively produced protocol for using psilocybe mushrooms as a therapy for cluster headache is now being tested in an authorized clinical trial at Yale. Clusterbusters needed to standardize their dose for pragmatic reasons. Clusterbusters used a set of practices to measure each dose. But mushrooms proved resistant to standardization, which ultimately meant each “buster” depended on a subjective, embodied scale to assess whether they had taken a correct amount of medication. And yet, this seemingly subjective standard “worked” in two respects: first, data collected to date suggests this dosing structure provides relief. Second, these standards provided sufficient information for use in an FDA-approved clinical trial. Clusterbusters’ research on psilocybin demonstrates the parallel but distinct needs for standardization across medical and citizen science. Whereas biomedical researchers must use standardized medicines to promote the legitimacy of their experiments, Clusterbusters use standards for a pragmatic purpose: ensuring psilocybin’s value to patients. We thus highlight how the goals of knowledge production of citizen science differ from those of formal science and call for more research to better understand how standardization can support knowledge production among citizen scientists. We also consider the potential advantages citizen scientists may accrue by operating outside the regulatory and epistemological apparatus that accompanies the formal process of standardization.
Sponsors for this event include the Holtz Center, the UW Center for Transdisciplinary Research in Psychoactive Substances, the American Institute of the History of Pharmacy, and George Urdang Chair in Pharmacy History.
Attendees must register to attend this virtual presentation.
Joanna Kempner, PhD, Associate Professor of Sociology at Rutgers University, writes, researches, and teaches at the intersection of science, medicine, and inequality, with a focus on the politics of pain and its treatment. Her award-winning research gives voice to those who are too often silenced, and addresses questions too often ignored. Her award-winning book, Not Tonight: Migraine and the Politics of Gender and Health (Chicago 2014), examines the social values embedded in how we talk about, understand, and make policies for people in pain. She is writing a second book, tentatively called Psychedelic Outlaws (under contract with Hachette Book Group), about patient-led research in the underground and its role in the “psychedelic renaissance.” Kempner is an interdisciplinary scholar who enjoys engaging with academic and public audiences. You can read about her work on her website at www.joannakempner.com or follow her on twitter @joannakempner.
