Overview
Institutional Review Boards (IRBs) must consider various nuances when it comes to the review and approval of social media research proposals. Some of these nuances will be examined here, with a particular focus on the public/private dichotomy of social media.
Roles and Responsibilities of IRBs
Institutional Review Boards play a key role in overseeing the protection of human participants in research studies [1]. Though they may oversee research in disciplines ranging from drug efficacy and safety to behavioral research on the determinants of learning, IRBs are similarly bound by the provisions outlined in federal regulations, such as 45 CFR 46 [1]. Though there have been several revisions since the Belmont Report was first published in 1979 and was codified into the “Common Rule” in 1991 [2], the three ethical principles guiding human subjects research have remained the same. These principles are:
- Beneficence: Research should maximize benefits for humanity, while minimizing risk or harm to participants (i.e. “do no harm”).
- Respect for Persons: Researchers must ensure that participants maintain their autonomy, agency, and right to privacy. This is exemplified by the informed consent that must be obtained from research participants.
- Justice: Costs and benefits of research must be fairly distributed among participating persons and groups.
By reviewing proposals, IRBs ensure that research studies abide by the three principles enumerated above before human participants are solicited.
Unique Ethical Challenges of Social Media Research
Though the three foundations of ethical research in the United States have not changed since their articulation in 1979, advances in technology necessitate changes to the way that researchers and IRBs apply and interpret them. Over the past quarter century, social media (SM) platforms, such as Facebook, YouTube, Instagram, X (formerly Twitter), and others, have become mainstays of modern life [3]. With easy-to-use interfaces and widespread availability on mobile devices, users are now able to interact and express themselves in ways and with a global scope heretofore never seen. This widespread adoption makes SM platforms fertile ground for researching many topics, such as human behavior and public health. However, the usage of these platforms for research studies introduces several ethical issues.
One issue is the “publicness” of SM data. Some people assume that SM platforms are public spaces, whereas others recognize that not all SM spaces are public. In any case, researchers should consider whether consent or other forms of awareness are necessary before data collection begins. Even though a platform may be de facto public, this does not mean that users consent or are even aware that their posts could be used for research purposes [4]. Indeed, in one study of social media users’ perceptions of researchers harvesting their posts for scientific study, 4 out of 5 posters to Twitter (now “X”) indicated their expectation that their consent would be solicited before their posts were used even though the public nature of the posts was acknowledged, as was the fact that researchers were acting in accordance with the terms and conditions for the site at the time [5].
Considerations for IRB Review of Social Media Research
There is not a “one size fits all” solution to reviewing studies involving social media. To this end, Hennell and colleagues have suggested the implementation of a situational ethical approach [7] that considers not only the overarching ethics of the situation, but also considers the SM users’ “expectations” of privacy [6]. Along these lines, some researchers have suggested that IRBs require not only the anonymization of participants from whom public data are collected [8], but also the paraphrasing or complete rewriting of direct quotes from social media sites to avoid making the owners of such quotes identifiable within the study [7]. Thus, even if they originally posted to a SM site with full acknowledgement of its public nature, they are not subject to identifiable inclusion in a research study in which they may not have agreed to participate.
Summary
Social media sites provide robust repositories of data that can provide useful insights into human behavior. Given the nature of social media sites, it is imperative that IRBs consider not only the nature of the data that are collected (i.e. public or private) and how (i.e. naturalistically or via intervention), but also the expectations that users have regarding how their posts may be used and/or perceived outside the context and platform in which they were originally submitted.
References
1. Protection of Human Subjects, 45 CFR § 46 (2018).
2. Office for Human Research Protections (OHRP). 2020. “Annotated Comparison of the Pre-2018 Common Rule with the Revised Common Rule.” Accessed June 28, 2024.
3. Samuel, Gabrielle, and Elizabeth Buchanan. 2020. “Guest Editorial: Ethical Issues in Social Media Research.” Journal of Empirical Research on Human Research Ethics 15(1-2):3-11.
4. Ford, Elizabeth, Scarlett Shepherd, Kerina Jones, and Lamiece Hassan. 2021. “Toward an Ethical Framework for the Text Mining of Social Media for Health Research: A Systematic Review.” Frontiers in Digital Health 2:592237.
5. Williams, Matthew L., Pete Burnap, Luke Sloan, Curtis Jessop, and Hayley Lepps. 2017. “Users’ Views of Ethics in Social Media Research: Informed Consent, Anonymity, and Harm.” In The Ethics of Online Research, 27-52. Leeds: Emerald Publishing Limited.
6. Gerrard, Ysabel. 2021. “What’s in a (pseudo)name? Ethical conundrums for the principles of anonymisation in social media research.” Qualitative Research 21(5):686-702.
7. Hennell, Kath, Mark Limmer, and Maria Piacentini. 2020. “Ethical Dilemmas Using Social Media in Qualitative Social Research: A Case Study of Online Participant Observation.” Sociological Research Online 25(3):473-89.
8. Golder, Su, Shahd Ahmed, Gill Norman, and Andrew Booth. 2017. “Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review.” Journal of Medical Internet Research 19(6):e195.
