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

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dc.contributor.authorTempini, Niccolo
dc.contributor.authorTeira Serrano, David
dc.date.accessioned2024-05-21T12:53:21Z
dc.date.available2024-05-21T12:53:21Z
dc.date.issued2019-01-01
dc.description.abstractIs 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.en
dc.description.versionversión final
dc.identifier.doihttps://doi.org/10.1080/03085147.2018.1547496
dc.identifier.urihttps://hdl.handle.net/20.500.14468/19440
dc.journal.issue1
dc.journal.titleEconomy and Society
dc.journal.volume48
dc.language.isoen
dc.relation.centerFacultad de Filosofía
dc.relation.departmentLógica, Historia y Filosofía de la Ciencia
dc.rightsinfo:eu-repo/semantics/openAccess
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0
dc.subject.keywordsSocial media
dc.subject.keywordsdigital networks
dc.subject.keywordspatient activism
dc.subject.keywordspatient-led research
dc.subject.keywordsclinical trial
dc.subject.keywordsblinding
dc.titleIs the Genie Out of the Bottle? Digital Platforms and the Future of Clinical Trialses
dc.typejournal articleen
dc.typeartículoes
dspace.entity.typePublication
relation.isAuthorOfPublicationad2bda75-c33c-48e1-aad8-c7eb3cfc04cb
relation.isAuthorOfPublication.latestForDiscoveryad2bda75-c33c-48e1-aad8-c7eb3cfc04cb
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