The Role of Scientific Uncertainty in the Production of AIDS-denialism: AIDS – Dissidents in the Internet

• In Event: 366 - Open Refereed Roundtable Session II
  In Refereed Roundtable: B. Table 12. Social Movements

Abstract

The rise of social media proved to be a fertile ground for the expansion of the AIDS-denialist movement (in the form of online communities). We studied the largest AIDS-denialist community in one of the most popular social networking services in Russia. We used netnography as a method for collecting data for qualitative analysis. We observed the community during 9 months (at least 2-3 times a week). While doing netnography we periodically downloaded the community discussions. In total we have downloaded 4821 posts and comments for analysis. Grounded theory approach was used for data analysis. Contrary to the widespread public health depictions of AIDS-denialists as totally irrational, our study suggests that some of those who become AIDS-denialist have sufficiently reasonable grounds to suspect that 'something is wrong' with the scientific theory, because their personal experience contradicts the unitary picture of AIDS disease progression they have in mind. Odd and inexplicable practices of some AIDS-centers only fuel these people's suspicions. We can conclude that public health practitioners’ practices may play a role in generating AIDS-denialists sentiments. In interactions with the newcomers the experienced community members highlighted the importance of personal autonomy and freedom of choice in decision-making consistent with the consumerist ideology of healthcare. The study findings suggest that healthcare workers should change a one-size-fits-all mode of counseling for a more complex and patient-tailored approach, allowing for diversity of disease progression scenarios and scientific uncertainty.

Authors

• Peter Meylakhs, National Research University-Higher School of Economics

• Yury Rykov, National Research University-Higher School of Economics