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Saturday, September 14 • 4:46pm - 6:30pm
“Exploring emergent research ethics and attitudes towards privacy on PatientsLikeMe.com”

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Over the past three decades, we’ve witnessed the formation of globalized computer-mediated communities of interest (Fischer, 2001) that transcend traditional imaginings of community (Anderson, 1991). Social media allows individuals to form virtual communities (Rhingold, 1993) centered on shared interests and the exchange of information. One area of particular growth is the formation of social media and social networking sites focused on preserving and sharing experiences of health and illness. Several social networking sites (like PatientsLikeMe.com) and cloud-based personal health archiving services (i.e. Google Health Vault) have emerged to support biosocial (Rabinow and Rose, 2006) community formation among patient groups and capitalize on the self-preservation and exchange of personal health information through data-mining research. These sites offer both patients and researchers with unique opportunities to explore meanings and lived-experiences of “illness” and patienthood in a networked society. These websites represent emergent modes of relating to the self and to others through the language of patienthood, and frequently science, in increasingly public and collaborative computing contexts. The secondary use of user-generated content from a consumer-oriented health social networking site has ethical implications that reconfigure notions of privacy, property, and the notion of work centered upon practices of social computing. 

This poster visualizes divergent user responses to a real privacy violation. It reports on a content analysis of data collected as part of 8 months of ethnographic participant-observation within the Mood Disorders Community on the patient-social networking site PatientsLikeMe.com. Responses to the privacy violation illustrate several ways in which the social networking of personal health information management and research participation subverts traditional notions of research ethics, privacy, and ownership of personal health information from academia. During the observation period, the website’s administrators detected an unauthorized data-mining bot in violation of the site’s user agreement. When news of the intrusion was made public, discussion erupted within the Mood Disorder Community contemplating the impact of data-mining on site users and the meaning of continued participation in social networking and personal health record keeping online. Participation within patient-orient social networks is a negotiated and calculated practice. Control over representation of identity and informatic commodities is achieved through the regulation of presence and participation in online locales; that is, through personal health information management practices. Thus, this poster aims to provide its audience with a set of best practices for social media research that preserves privacy and agency through ethical information management. Analysis of the data demonstrates ways in which social media locales can subvert conventional norms and expectations concerning research demonstrate how agency-preserving conventions (such as anonymity and the ability withdrawal from a study with one’s data) can also facilitate the appropriation of user-generated content by website owners and transform collaborative computing into uncompensated labor. 

Works Cited 

Anderson, B. (2006). Imagined communities: Reflections on the origin and spread of nationalism. Verso Books 

Fischer, G. (2001, August). Communities of interest: Learning through the interaction of multiple knowledge systems. In Proceedings of the 24th IRIS Conference (pp. 1-14). Department of Information Science, Bergen. 

Rabinow, P., & Rose, N. (2006). Biopower today. BioSocieties, 1(2), 195.

Rheingold, H. (1993). The virtual community: Homesteading on the electronic frontier. Addison Wesley Publishing Company.


Robert Douglas Ferguson

McGill University, Canada

Saturday September 14, 2013 4:46pm - 6:30pm EDT
Rowe Atrium

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