by Sandra Soo-Jin Lee, Ph.D.
Social media is increasingly creating the contours of many Americans’ daily lives as a medium that is simultaneously intimate and powerfully public. Beyond providing tools to communicate with friends, family, and colleagues, social media platforms have become critical sources of news around the world and a significant medium for self-expression. The ability to amplify one’s joy, fear, anger and hope to hundreds, thousands, even tens of thousands of “friends” with a click of a button has altered how we think about the distribution of information and social networks. In this age of mounting expectation over the possibilities of ‘big data,” social media sites are focal points for accessing large amounts of detailed, personal information cheaply and quickly. However, there is little guidance on how to address questions on the ethics of engaging these diverse portals and their users in research. Bioethics can play a lead role by identifying what is at stake when creating these new research relationships.
As an anthropologist who conducts ethnographic research, I have grappled with these questions of group entrée, disclosure, and transparency. Participant observation is a method that begs many of these ethical challenges that emerge when using social media as a recruitment platform. Professional guidance demands that participants be aware of their presence and understand the purpose of the research, however, details on how to inform potential participants can be ambiguous and are often context specific. What is more clear is that consent in one’s fieldsite is an ongoing process that requires preparation, reflection, and a commitment to maintaining trust. However, these issues are complicated by online communities that do not require physical interaction and face-to-face contact. When is it, if ever, respectful to record and take notes on what people do and say? When and how should researchers announce themselves and their intentions in a shifting landscape where study participants are constantly in flux?
Current regulations have not kept pace with the diverse ways in which research can occur through social media. The vacuum in policy has placed unrealistic expectations on existing review structures to address the changing social and commercial arrangements that characterize these online platforms. When Facebook altered the news feeds of approximately 700,000 of their users in 2012 to see whether reducing either positive or negative content would impact the “emotions” of their subsequent posts, some accused the company of deception. Debate over whether Facebook was obligated to obtain consent or at least notify users that such activities might be possible reveal the limitations of existing review mechanisms and the unanswered question of responsibility. Shortly after the Facebook study results were published in Proceedings of the National Academy of Sciences (PNAS), the PNAS editors issued an Editorial Expression of Concern, stating that although private companies are not required to fulfill provisions laid out by the Common Rule, they were unsure as to whether Facebook had fulfilled “the principles of obtaining informed consent” by allowing participants “to opt out”. Shortly thereafter, Facebook changed its data use policy to explicitly include “research”.
The focus of the controversy over the ethics of the Facebook study emerged publicly in part from their collaboration with academic researchers. The journal’s question of whether the authors had obtained approval from their university IRB underscores both the central role of IRBs and also the limitations of addressing the network of collaborations between academia, profit and not-for-profits institutions. Although the controversy led to a change in Facebook’s data use policy, it is unclear whether such agreements can be effective tools in creating transparency and augmenting understanding of how online information may be used. Furthermore, if academic researchers were not involved, what if any responsibility would there be to inform, much less consent Facebook members to a study?
In their target article, Gelinas et al. engage the challenges of this shifting terrain and provide concrete tools to support IRB review. They caution that social media as a medium for research does not necessarily warrant special scrutiny and generally should be evaluated using similar standards as other recruitment methodologies, particularly as they relate to privacy and transparency. Their work and the collection of commentaries in this issue reflect the challenges of addressing the blurring subjectivities of consumer, community member, interlocutor, researcher and facilitators on social media. While efforts towards transparency may dictate explicit demarcations of when a community member has become a researcher or when a consumer has become a study participant, it is often impractical if not impossible to indicate when one role begins and the other ends. To what extent can we rely on transactional agreements to inform users of the potential for research? What type of contact constitutes research? What type of disclosure and/or consent is required? And, what additional responsibilities come with entering into these relationships through social media platforms?
Research is based on relationships. Acknowledging that embedded in research is the concept of power, a central challenge in preserving relationships is addressing the role of trust. This can be complicated by social networking sites that are often construed as only a diffuse set of connections, without a center. As social media becomes embedded into everyday life, relying on existing structures to navigate ethical review may create challenges in the near and long term. Innovative approaches that safeguard the research relationship will be critical and it will depend on addressing shifting online subjectivities. The question of how the benefits of speed, scale and opportunity will be balanced with the potential loss of individual autonomy matters as our answer will bear heavily on how we attend to trust, transparency and responsibility in future research relationships.