Case Study: An Ethics Case Study of HIV Prevention Research on Facebook: The Just/Us Study

• Published in: Journal of pediatric psychology Vol. 36; no. 10; pp. 1082 - 1092
• Main Authors: Bull, Sheana S., Breslin, Lindsey T., Wright, Erin E., Black, Sandra R., Levine, Deborah, Santelli, John S.
• Format: Journal Article
• Language: English
• Published: United States Oxford University Press 01.11.2011
• Subjects: Adolescent; Blogging; Confidentiality - ethics; Data Collection - ethics; Ethics, Research; Female; HIV Infections - prevention & control; Humans; Male; Social Networking; Special Section: Research Ethics in Pediatric Psychology; health behavior; research design and methods; ethical issues
• ISSN: 0146-8693; 1465-735X
• DOI: 10.1093/jpepsy/jsq126

Objective To consider issues related to research with youth on social networking sites online. Methods Description of the data collection process from 1,588 participants in a randomized controlled trial testing the efficacy of HIV prevention education delivered on Facebook. Using respondent-driven sampling, staff-recruited participants are encouraged to recruit up to three friends to enroll in the study. Results Researchers should (a) consider whether an online social networking site is an appropriate place to implement a research study; (b) offer opportunities to review informed consent documents at multiple times and in multiple locations throughout the study; and (c) collect data outside the social networking site and store it behind secure firewalls to ensure it will not be accessible to any person on the social networking site. Conclusions Online social networks are growing in popularity. Conducting research on social media sites requires deliberate attention to consent, confidentiality, and security.