Addressing the Ethics Gap in Social Media & Digital Health Research
In recent years, pervasive information and communication technologies have created new opportunities for researchers to understand human behaviors. Social media platforms like Facebook and Twitter are two examples of tech-enabled strategies being used to facilitate research.
Social media plays an undeniable role in the daily lives of many Americans. We utilize social media for a wide range of tasks, from seeking out information to interacting with others. According to the Pew Research Center, 68% of all American adults are active social media users. Nearly 8 in 10, or 79% of online Americans now use Facebook, making it the most popular social media platform.
Social media has proven to be a valuable, cost-effective tool for researchers, particularly with the often costly participant recruitment process. From data mining projects to passive surveillance of online chats, researchers are gathering key insights on users across platforms and networks. This raises important ethical considerations regarding user consent and expectations of privacy, which speaks to the need for further research and action. For example, social media users may not realize the extent to which their content and profiles are made available to the public. Likewise, due to the nature of social networks, conversations between friends and family of a research participant may become part of the research record. Furthermore, ethics review boards often struggle to keep current with the latest technology and evaluate potential study risks. Lacking guidance, key research stakeholders (researchers, participants and regulatory bodies) are challenged to know how best to design and review research using social-media enabled tools.
Over the past few years, a few initiatives have launched to identify and address this gap in guidelines. For example, the Pervasive Data Ethics for Computational Research (PERVADE) project, supported by the National Science Foundation, is working to develop best practices to guide “big data” research. PERVADE is led by Katie Shilton, Associate Professor in the College of Information Studies at the University of Maryland and Principal Investigator. According to Dr. Shilton, the goal of the PERVADE project is to “reveal ethical practices and norms to guide those who utilize big data and to inform policymaking and regulation.” Likewise, John Wilbanks of Sage Bionetworks and Mark Rothstein at the University of Louisville are leading the National Cancer Institute supported project to develop best practices for research that falls outside of federal regulatory structures with a primary focus on mobile health apps. Specific to social media, the Harvard Catalyst group published guidance for researchers, which can be accessed on the Connected and Open Research Ethics (CORE) Resource Library.
This month, we hosted our second CORE Webinar with Dr. Sherry Pagoto from the University of Connecticut, who presented on the opportunities and challenges in using social media to deliver behavioral interventions. During her talk, Dr. Pagoto stressed that the future implications of social media are unclear, given that it is a fairly new concept. She noted the ethical challenges facing key stakeholders and the need for collaboration amongst stakeholders within and across institutions. Learn more by visiting the CORE webinar page to watch the recording!
About Connected and Open Research Ethics (CORE): The CORE initiative was established in 2015 through a grant by the Robert Wood Johnson Foundation. The CORE aims to support research stakeholders (IRB members, participants and researchers) navigate the ethical and regulatory aspects of technology-enabled research. Learn more here: www.core.ucsd.edu
 Pew Research Center. Demographics of Social Media Users in 2016. (2017). Retrieved from: http://www.pewinternet.org/2016/11/11/social-media-update-2016/
 Frandsen M, Thow M, Ferguson SG. The Effectiveness Of Social Media (Facebook) Compared With More Traditional Advertising Methods for Recruiting Eligible Participants To Health Research Studies: A Randomized, Controlled Clinical Trial. JMIR Research Protocol, 2016;5(3):e161
 Nebeker, C., Harlow, J., Linares-Orozco, R., Espinoza-Giacinto, R., Bloss, C., Weibel, N. (2017). Ethical and regulatory challenges with emerging technologies: IRB perspectives. American Journal of Bioethics – Empirical Research (4)