Is the Genie Out of the Bottle? Digital Platforms and the Future of Clinical Trials

Tempini, Niccolo y Teira, David . (2019) Is the Genie Out of the Bottle? Digital Platforms and the Future of Clinical Trials.

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Título Is the Genie Out of the Bottle? Digital Platforms and the Future of Clinical Trials
Autor(es) Tempini, Niccolo
Teira, David
Materia(s) Filosofía
Abstract Is it possible to conduct impartial clinical trials in a world full of digital networking tools that patients can use to coordinate themselves and act against research protocols? This paper builds on an ethnography of PatientsLikeMe, a company running an Internet social media network where patients with different conditions share their clinical data with standardised questionnaires. The company faced a serious dilemma in 2011 when some ALS patients, members of the site, started sharing data about a phase II clinical trial of an experimental drug (NP001) in which some of them were participating, to anticipate the experiment’s outcomes and understand each one’s allocation over trial arms. In parallel, some other patients were using the site and other web tools to coordinate and run their own replication of the trial with homebrew mixes of industrial grade chemicals. PatientsLikeMe researchers reflected on their position as networks managers and eventually decided to use the collected data to develop their own analysis of the efficacy of the original compound, and of the homebrewers’ compound. They presented the NP001 events as a case in point for articulating a new social contract for clinical research. This paper analyses these events, first, by understanding the clinical trial as an experiment organisation form that can succeed only as long as its protocol can be enforced; second, we observe how web networks make it dramatically easier for the trial protocol to be violated; finally, we point out how a potentially dangerous confluence of interests over web networks could incubate developments that disrupt the status quo without creating a robust and safe alternative for experimentation. We conclude by warning about the interests of the pharmaceutical industry in exploiting patients’ methodological requests to its own advantage.
Palabras clave Social media
digital networks
patient activism
patient-led research
clinical trial
blinding
Fecha 2019-01-01
Formato application/pdf
Identificador bibliuned:501117
DOI - identifier https://doi.org/10.1080/03085147.2018.1547496
Nombre de la revista Economy and Society
Número de Volumen 48
Número de Issue 1
Página inicial 77
Página final 106
Versión de la publicación acceptedVersion
Tipo de recurso Article
Derechos de acceso y licencia http://creativecommons.org/licenses/by-nc-nd/4.0
Tipo de acceso Acceso abierto

Tipo de documento: Artículo de revista
Collection: Departamento Lógica, Historia, Filosofía de la Ciencia (UNED). Artículos
 
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Creado: Thu, 06 Jun 2019, 18:32:43 CET by David Teira