media regulation

https://doi.org/10.1177/1556264618793773

Journal of Empirical Research on Human Research Ethics 2018, Vol. 13(4) 452 –454 © The Author(s) 2018 Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/1556264618793773 journals.sagepub.com/home/jre

Meeting Report

This year (May 2018), a group of U.K. researchers came together to hold a workshop on social media (SM) research ethics to explore current thinking in the field. The workshop brought together researchers, research ethics committee (REC; institutional review board [IRB] in the United States) members, and research institution representatives. The panel of 10 expert speakers from both health and non-health- related disciplines1 discussed their research within the con- text of how understandings of SM research ethics have changed and are progressing. Discussions at the workshop emphasized a need to shift how we think about SM research ethics, from considering only specific ethical issues, to including ethics along the entirety of the research process (Kara, 2018), thinking about issues (and solutions) in com- bination, as well as including broader questions about ethi- cal governance.

It is well understood that SM research blurs the boundar- ies around traditional ethical notions of human participant research. Much discussion has focused on questions relat- ing to, for example, whether SM data are human participant research, and in turn, whether we need to receive consent from SM users to use SM data; and whether SM data should be viewed as publicly accessible or a private space, and what this means in terms of harnessing, analyzing, and

presenting the data (The British Psychological Society, 2017; Roberts, 2015). The new and fast-developing nature of SM; the variety of unique SM platforms; and the diver- sity of disciplinary methodologies used to analyze SM data, have led to the realization that there can be no blanket answers to these questions. Rather, any ethical approach to SM research must be context specific, requiring deep thought by scholars embarking on their work about how best to approach their research ethically (Kara, 2018). This seems justifiable, but raises the question of how we can govern ethical decision making if SM researchers are mak- ing individual case-based ethical decisions during their research. Indeed, our own research has identified a

793773 JREXXX10.1177/1556264618793773Journal of Empirical Research on Human Research EthicsSamuel et al. research-article2018

1Lancaster University, UK 2King’s College London, UK 3Northumbria University, Newcastle upon Tyne, UK 4We Research It Ltd, St Mary’s Crescent, Uttoxeter, UK 5NatCen Social Research, London, UK 6Oxford Brookes University, UK 7The University of Sheffield, UK

Corresponding Author: G. Samuel, Department of Global Health and Social Medicine, King’s College London 40 Aldwych, WC2B 4BG London, UK. Email: [email protected]

Is It Time to Re-Evaluate the Ethics Governance of Social Media Research?

G. Samuel1,2, W. Ahmed3, H. Kara4, C. Jessop5, S. Quinton6, and S. Sanger7

Abstract This article reports on a U.K. workshop on social media research ethics held in May 2018. There were 10 expert speakers and an audience of researchers, research ethics committee members, and research institution representatives. Participants reviewed the current state of social media ethics, discussing well-rehearsed questions such as what needs consent in social media research, and how the public/private divide differs between virtual and real-life environments. The lack of answers to such questions was noted, along with the difficulties posed for ethical governance structures in general and the work of research ethics committees in particular. Discussions of these issues enabled the creation of two recommendations. The first is for research ethics committees and journal editors to add the category of ‘data subject research’ to the existing categories of ‘text research’ and ‘human subject research’. This would reflect the fact that social media research does not fall into either of the existing categories and so needs a category of its own. The second is that ethical issues should be considered at all stages of social media research, up to and including aftercare. This acknowledges that social media research throws up a large number of ethical issues throughout the process which, under current arrangements for ethical research governance, risks remaining unaddressed.

Keywords social media, ethics, research ethics, research ethics committees

Samuel et al. 453

“personal ethics” culture for SM research, in which SM researchers monitor their own (often different) decisions about how best to act ethically (Samuel & Derrick, 2017). This has, in some instances, led to a potentially problematic “cafeteria ethics,” in which researchers pick and choose which ethical perspective to adhere to based on their own ethical principles and viewpoint.

Discussions at the workshop enabled the start of a con- versation about what ethical governance structures could look like as we move to address some of the issues above, and in particular pointed to the need to consider ethics along the whole SM research process. From these discussions we make two recommendations, which we explore below.

First, during the day, it became increasingly apparent that the question of whether SM research should be classi- fied as human participant versus other research may have little value in this field. Journal editors and REC members often ask this question to determine whether ethical approval and/or consent is required for a specific research project. However, workshop speakers provided strong case examples of researchers who classified SM data as “text” due to disciplinary norms, but at the same time came to the realization that receiving consent is ethical best practice (Lomborg, 2013). This was not a unique example, but something that is becoming increasingly common in the field. As such, the language at the workshop was not cen- tred around notions of “human participants,” rather work- shop speakers spoke about the absolute requirement that all researchers—no matter which data were being analyzed or how—should consider SM users’ perspectives (Bond, Ahmed, Hind, Thomas, & Hewitt-Taylor, 2013). If we can neither accurately classify SM research as human partici- pant research or text-based research, our recommendation is for RECs and journal editors to incorporate the addi- tional term “data subject research” in their ethical gover- nance documents to encapsulate data from this field. Ethical governance of “data subject research” can be aligned with key principles of SM research ethics, which may differ from human participant or nonhuman partici- pant research. We heard at the workshop that some U.K. RECs have started to move toward this approach, though we understand that practice is still very inconsistent.

Second, workshop speakers emphasized the necessity to view ethics as much broader than through the lens of binary decisions around consent and anonymization, as is currently typical in a lot of SM research ethics, and to view research ethics as more complex and at all stages of the research pro- cess—from the research question stage through to publica- tion and aftercare (Kara, 2018). Moreover, it was stressed that the data collection stage—the stage most focused on by RECs/IRBs—may account for only a minor aspect of a SM research project. It was also stressed that while this may also be the case for other research fields, it is particularly relevant to SM research given the abundance and permanency of

online data. For instance, when choosing a research ques- tion, the speakers explained the need to be aware that “just because it [the social media data] is there, doesn’t mean we should use it” (Quinton & Reynolds, 2018a), rather we must ensure that if we are using SM data, that the research ques- tion we are asking the data has some form of public value. While this seems obvious, it is important to stress this, because the nature and accessibility of SM data could mean that this could otherwise be overlooked. Speakers also stressed that at the dissemination stage, and especially when applying quantitative methodologies, it is imperative to include transparent explanations of analytical methods/algo- rithms used to analyze SM data so as to ensure findings are not interpreted as the whole “truth” but one version depen- dent on the opacity of the processes through which the data passes as well as researcher biases (Quinton & Reynolds, 2018b). And finally, the importance of considering aftercare was noted (Kara, 2018)—specifically that researchers remain contactable in years to come. This was viewed as particularly important to safeguard those participants who have previously consented to data being available on SM platforms in the form of raw or interpreted data, but who later wish to remove this (the example was given of a photo- graph of a participant conducting a specific activity which they later wanted removed because they were looking for employment).

We argue that the above points are examples of the types of issues we need to consider in more depth when thinking about how to develop an SM research ethical governance structure. Therefore, our recommendation is that, when developing such an ethical governance structure, we use the opportunity to re-evaluate the REC’s role in reviewing SM research, and how it can best accommodate this broader view of ethics. The current REC structure—inherited from the bio- medical field—may be inadequate, and we must urgently start a conversation about how the REC role can incorporate a longitudinal perspective of “ethics as a process” over the entirety of the SM research process and beyond.

To start this conversation, and to explore issues sur- rounding SM research ethics and governance more broadly, The Journal of Empirical Research on Human Research Ethics (JERHRE) invites contributions to a forthcoming Special Issue on Ethical Issues in Social Media Research, Guest Edited by Gabrielle Samuel, PhD (King’s College London) and Elizabeth Buchanan, PhD (University of Wisconsin-Stout). The special issue aims to publish articles which

1. explore the perspectives of researchers, REC/com- mittee/IRB chairs and members, research institu- tions and affiliated bodies, the public and/or SM users about SM research;

2. explore questions around best practices in terms of the ethical review of SM research;

454 Journal of Empirical Research on Human Research Ethics 13(4)

3. explore, report, and/or critically examine different ethical issues, which have emerged from SM research, particularly novel issues arising from under explored SM platforms; and

4. explore stakeholder perspectives on recent SM scandals, such as that of Cambridge Analytica/ Facebook.

Abstract submission for the special issue: September 15, 2018; submission of full manuscripts: January 15, 2019; target publication date: August 2019. More details can be found on the JERHRE home page at http://journals.sage- pub.com/home/jre

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the Wellcome Trust Seed Award in Humanities and Social Science (201669/Z/16/Z).

Note

1. The boundaries between health-related and other data are breaking down, and the ethical governance of health data is not, cannot, and should not be distinguished or separated

from data governance in general (http://www.who.int/bulle- tin/volumes/96/1/17-197426/en/). The governance of health- related SM research needs to fall under the broader category of ethical governance in general.

References

Bond, C. S., Ahmed, O. H., Hind, M., Thomas, B., & Hewitt- Taylor, J. (2013). The conceptual and practical ethical dilemmas of using health discussion board posts as research data. Journal of Medical Internet Research, 15(6): e112.

The British Psychological Society. (2017). Ethics guidelines for internet-mediated research. Retrieved from https://www.bps. org.uk/news-and-policy/ethics-guidelines-internet-mediated- research-2017

Kara, H. (2018). Research ethics in the real world: Euro-Western and Indigenous perspectives. Bristol, UK: Policy Press.

Lomborg, S. (2013). Personal internet archives and ethics. Research Ethics, 9, 20-31.

Quinton, S., & Reynolds, N. (2018a). Blurring the boundaries. In K. Woodfield (Ed.), The ethics of online research (pp. 53-78). Bingley, UK: Emerald Press.

Quinton, S., & Reynolds, N. (2018b). Understanding research in the digital age. London, England: Sage.

Roberts, L. D. (2015). Ethical issues in conducting qualitative research in online communities. Qualitative Research in Psychology, 12, 314-325.

Samuel, G., & Derrick, G. (2017). Social media research, “personal ethics,” and the Ethics Ecosystem [New Social Science Blog]. New Social Media. Retrieved from http://nsmnss.blogspot. co.uk/2017/10/social-media-research-personal-ethics.html. Archived at http://www.webcitation.org/6zgAWcdkQ