Crowd Research: From Resistance to Creating Alternative Influence Avenues. The Case of Mannitol and Parkinson’s

• In Event: Real-World Experiments for Knowledge Production

Abstract

This abstract describes an ethnographic (observations and interviews) study of an alternative, entrepreneurial model for evaluating mannitol as a treatment for Parkinson's. Between 2012-2014, Israeli scientists identified mannitol as potentially effective against clumps of alpha-synuclein, a known sign of Parkinson's. However, since mannitol is a natural substance, its products cannot be patented. Pharmaceutical companies are therefore uninterested in researching mannitol's efficacy against Parkinson's. We describe establishment of an Israeli high-tech biomedical company seeking to fill this vacuum via "network-based" studies. We describe mobilization of several Israeli entrepreneurs-turned-philanthropists, and their decision to employ "crowd research" through mass recruitment of patients. We consider this case in comparison with earlier, pioneering alternative research models, such as 1987 grassroots research evaluating aerosolized pentamidine as an AIDS treatment. There, community-based (non-academic) physicians united with lay AIDS patients and those at risk for AIDS, conducting influential clinical trials. We also explore the possibilities our case suggests for using the network for a new, crowd-sourced type of research that, in the "PatientsLikeMe" era, generates a new medical-public discourse. We next employ textual and content analyses epistemically and rhetorically to track infiltration of the term "nutritional supplement" in the company’s discourse. This terminology reflected their tactical decision to conduct a form of boundary work by positioning mannitol so as to exempt it from the onerous approval processes required for pharmaceuticals, and to create an alternative channel of influence and action through the food supplement market. Overall, this work expands our conceptions of the forms lay/community-based science can take.

Authors

• Shlomo Guzmen Carmeli, Dep't. of Sociology & Anthropology, Bar-Ilan University

• David A. Rier, Bar-Ilan University