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

Cargando...
Miniatura
Fecha
2019-01-01
Editor/a
Director/a
Tutor/a
Coordinador/a
Prologuista
Revisor/a
Ilustrador/a
Derechos de acceso
info:eu-repo/semantics/openAccess
Título de la revista
ISSN de la revista
Título del volumen
Editor
Proyectos de investigación
Unidades organizativas
Número de la revista
Resumen
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.
Descripción
Categorías UNESCO
Palabras clave
Social media, digital networks, patient activism, patient-led research, clinical trial, blinding
Citación
Centro
Facultad de Filosofía
Departamento
Lógica, Historia y Filosofía de la Ciencia
Grupo de investigación
Grupo de innovación
Programa de doctorado
Cátedra