The cancer pill controversy on Facebook: The clash between scientific authority and patient experience

Author: Marina Ramalho e Silva – Museum of Life, Oswaldo Cruz Foundation, Brazil

Co-authors:

• Vanessa Brasil de Carvalho – House of Oswaldo Cruz, Oswaldo Cruz Foundation, Brazil
• Alan de Jesus – National Institute of Science and Technology for Public Communication of Science and Technology, Brazil

This presentation proposal reports an analysis of a Facebook post and its comments around the controversy of synthetic phosphoethanolamine, known as “cancer pill” in Brazil. Since the 1990s, the substance was produced and distributed free of charge by a renowned Brazilian public university (University of São Paulo) to cancer patients, even without having official registration from the Brazilian regulatory agencies. In 2014, however, the University banned the distribution, leading patients to request access to the substance through lawsuits and triggering a court battle that generated national commotion and news headlines, including a Nature editorial piece. On the one hand, cancer patients and their families claimed the right to access the compound; on the other hand, scientific community and medical associations pointed to the risks of supplying a substance with no scientific evidence of its safety nor efficacy in human beings. In our study, we analyze the most commented post – as well as its comments – of the main Facebook page dedicated to phosphoethanolamine. This page was identified by searching for the keywords “Fosfoetanolamina” and “pílula do câncer” in Facebook (in Portuguese) and was selected because it contained the highest number of likes. A quantitative analysis has shown that most of the comments – more than 2.000 comments in just one post – had arguments in favour of the phosphoethanolamine use, purchase and sale. In addition, from a qualitative analysis of these comments and taking into account the current post-truth context, we discuss the clash between the official scientific authority – which uses scientific methods to chancell its arguments – and the cancer patients’ authority – who draw on their experience to support their discourse – publicized in a recent technological platform: Facebook.

The author has not yet submitted a copy of the full paper.

Presentation type: Individual paper
Theme: Technology