media regulation

https://doi.org/10.1177/1556264619901215

Journal of Empirical Research on Human Research Ethics 2020, Vol. 15(1-2) 3 –11 © The Author(s) 2020 Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/1556264619901215 journals.sagepub.com/home/jre

Guest Editorial

In the 25 or so years since the first social media (SM) plat- form hit the online world, researchers have been drawn to these virtual spaces for scholarly purposes: SM has cre- ated unprecedented opportunities for research endeavors (Pagoto & Nebeker, 2019)—either as an effective way to recruit participants (Chu & Snider, 2013), as intervention platforms (Renton et al., 2014; Rice et al., 2014), or as a general source of data. At the same time, scholars have reflected and debated many times and in many different ways, questions relating to the ethics of SM research (Buchanan, 2017). As Hibbin et al., 2018 explain, ordinar- ily, researchers’ responsibilities are outlined in a range of disciplinary codes of conduct (The British Psychological Society, 2017; Jones, 2011). In the off-line context, these responsibilities have mostly clear, familiar boundaries. However, in SM research, new challenges render familiar ethical principles difficult to navigate (Does researching in online spaces change the foundations of traditional research ethics principles, and what should ethical research look like in this new era of online spaces?) (Buchanan, 2017; Hibbin et al., 2018).

In this special issue, van Heerden et al. and Sloan et al. stress that the “fundamental principles of conducting ethical social research remain the same.” However, principles are not synonymous with practice, and this can leave gaps in terms of interpretation. Samuel et al.’s work is a reminder of this. These authors have argued that in the absence of guid- ance on the complexities of SM research, a “personal eth- ics” approach has developed, with each researcher governing their own ethics practice (Samuel et al., 2019).

When SM platforms initially appeared, the online world was different: Individuals chose who, what, where, and when to participate online, and the research role was more often than not clearly defined; the stronghold of ubiquitous and pervasive computing had not taken complete control (Buchanan, 2017). This period saw the first wave of SM research, dominated by online surveys, participant observa- tions, online interview, and focus groups (Buchanan, 2017). Ethical questions revolved around whether SM data should be considered human subjects research or text, how these deliberations influence practices of consent, and whether SM users have perceived expectations of privacy when using SM platforms (Hudson & Bruckman, 2005; Iphofen, 2017; Whiting & Pritchard, 2017; Zimmer & Kinder- Kurlanda, 2017). Other concerns included those relating to issues of identifiability of participants, vulnerability,

potential harm, intrusiveness, and confidentiality (Bassett & O’Riordan, 2002; Carter et al., 2016; Convery & Cox, 2012; Eynon et al., 2017; Henderson et al., 2013; Hunter et al., 2018; Kara, 2018; Massanari, 2018; Moreno et al., 2013; Swirsky et al., 2014). These considerations were developed into the first and second Association of Internet Researchers (AoIR) ethics guidance for researchers using SM data (Ess, 2002; Markham & Buchanan, 2012).

Innovation is not static: Technological speed and infra- structural advances drove SM platforms into the realms of Facebook, Twitter, YouTube, blogs, and online chatrooms/ forums, and with it the possibilities within which users could engage and participate online (Ess, 2017). SM research methodologies, too, evolved, as they progressed seamlessly from the second wave to more analytical and autonomous processes which draw on large quantitative (“big data”) analysis and data modeling. In light of this, the AoIR revisited its ethics guidelines in 2012 and again in 2019 (Buchanan, 2017; Franzke et al., 2020; Markham & Buchanan, 2012; Zimmer & Kinder-Kurlanda, 2017).

More recently, we have witnessed colossal changes in SM environments. As we approach 3.5 billion people using SM globally,1 and as researchers can now easily access petabytes of data (Zimmer & Kinder-Kurlanda, 2017), a range of high-profile research ethics scandals, such as Cambridge Analytica, OkCupid, and the Facebook Emotional Contagion study, remind us of the ethical issues at stake. Debates, which originally revolved around con- sent and privacy for SM data use as an isolated source, are being reshaped by large-scale “big data” surveillance, and scraping and mining research employing artificial intelli- gence (AI) and data modeling methods. These latter meth- ods often link SM data across platforms and/or with mobile and wearable devices. Now, new (more political and global) ethical questions are emerging, around issues of power, social justice, inequality, bias, and cultural plu- ralism. Human subjects are now data subjects (Buchanan, 2017; Markham & Buchanan, 2012). Heightened concerns around privacy are even seemingly having the opposite effect on SM research—as Ravn et al. show in this special issue; as SM sites try to window-dress themselves as being “ethical” in relation to privacy issues, it is becoming increasingly difficult for researchers to access SM data for their research. For traditional academic researchers, this is problematic as industry researchers control more and more of the research space.

901215 JREXXX10.1177/1556264619901215Journal of Empirical Research on Human Research EthicsGuest Editorial editorial2020

Guest Editorial: Ethical Issues in Social Media Research

4 Journal of Empirical Research on Human Research Ethics 15(1-2)

The past 25 years have produced countless volumes, papers, workshops, and regulatory responses (Buchanan, 2017). Numerous scholars and professional bodies have published guidelines or have developed case studies and/or fora to help scholars navigate the nuanced and complex ethical terrain of SM research (The British Psychological Society, 2017; British Sociological Association, 2017; Council for International Organizations of Medical Sciences, 2016; Markham & Buchanan, 2012; Pagoto & Nebeker, 2019; Torous & Nebeker, 2017). Moreover, dis- crete disciplinary approaches have developed, with their own methods and ethics (Buchanan, 2017). However, as emphasized by the range and types of issues raised in con- tributions to this special issue, researchers across disciplines continue to seek answers or remedies to the very first ques- tions which were asked around consent and privacy. Perhaps because, as technology drives forward, researchers struggle to keep up; because as debates in the published literature move on and guidelines are updated by experienced researchers, research ethics committees (RECs; also called Institutional Review Boards [IRBs]) and novice SM researchers remain unaware of these guidelines and feel uncertain about how to review and research this field of study; and because as ethics debates move from revolving around consent and privacy to include wider issues of trust, power, accountability, solidarity, and discrimination, still more traditional questions around consent and privacy remain close to the hearts (and ethics culture) of researchers and reviewers.

This special issue contributes to the literature in the field of SM research ethics by bringing together 9 publica- tions, each empirically reporting on ethics and ethical deci- sion making from the ground up. The papers provide additional context, case studies, and guidelines for those researching online or reviewing such research proposals. By teasing out questions of consent and public–private ten- sions (Ross, Ravn et al.; Sloan et al.), context (Özkula), SM user perspectives (Al Zou’bi et al.; Perrault & McCullock, 2019), and newer digital methodologies (Sloan et al.; van Heerden et al.), they illustrate the “everyday” ethics continually faced by researchers engaging with SM. The papers show that however far we have come to a con- sensus in the field of SM research ethics, there is some way yet to go.

Our first set of papers (Hokke et al.; Sellers et al.) empir- ically explores the research ethics review process. First, Hokke et al. conducted a large quantitative cross-sectional online survey of 401 Australian researchers and REC mem- bers regarding their experience, attitudes, and ethical con- cerns toward recruiting, retaining, and tracing research participants using SM. In their paper “The Ethics of Using Social Media to Engage Research Participants: Perspectives of Australian Researchers and Ethics Committee Members,” the authors show that neither researchers nor REC members

were particularly confident in identifying, or being knowl- edgeable of, the ethical issues associated with SM-based research. Few respondents were aware of relevant SM-specific ethics guidelines – including those of Gelinas et al. (2017), which—despite their drawbacks, for example, see Samuel (2017)—specifically address SM recruitment. Ethical decision making was therefore based on more gen- eral ethics guidelines, terms of service provisions, other colleagues, the REC Chair, and professional and personal experience.

In comparison with Hokke et al., our second paper by Sellers et al., “Reasoning ‘Uncharted Territory’: Notions of Expertise Within Ethics Review Panels Assessing Research Use of Social Media,” qualitatively explores the U.K. con- text of the research ethics review process, this time focusing on SM researchers and RECs’ experience and attitudes of using SM data for research purposes. Many of the two papers’ findings resonate more generally. Drawing on 19 interviews with REC members and 14 interviews with SM researchers, Sellers et al. show a lack of personal and pro- fessional experience of SM (even less so than Hokke et al.), with many REC members feeling that they do not possess sufficient expertise to review SM research and most researchers similarly viewing REC members as inexperi- enced (though they varied in the extent to which researchers viewed this as problematic). The authors highlight that, while RECs and researchers are aware of SM guidelines published by various professional bodies (perhaps more so than reported by Hokke et al.), guidelines could only par- tially compensate for REC members’ lack of experience and perceived expertise. Similar to previous studies, their inter- viewees often relied on informal resources to support deci- sion making, including advice from colleagues and SM researchers (Buchanan & Ess, 2009; Buchanan & Hvizdak, 2009).

The findings reported in both these papers point to a repeated issue hinted at above: While SM research ethics has been discussed and deliberated for over two decades, literature, case studies, and guidelines are not directly nor consistently filtering into practice. The authors note that such issues are not unique to SM research but rather are a product of the fast-paced nature of scientific research more generally, and that technological change remains an ongo- ing challenge (Vitak et al., 2017). Both papers recommend several steps to ensure that REC expertise in SM research keeps pace of this fast-developing field. They call for an Internet or SM expert to be included as an REC member or consultant to the REC; they emphasize the need for SM research ethics training via specialized training workshops, and encourage researchers and REC members to access and refer to SM guidelines taking a proactive, dialogic, contex- tualized approach.

Research ethics, of course, goes beyond procedural eth- ics (Giraud et al., 2019; Markham, 2018; Ravn et al., this

Guest Editorial 5

issue), and the second set of papers in this special issue focuses on the more “every-day” ethics of research practice, reporting on researchers’ reflections and fine-grained analy- ses of different contexts of practice. As discussed above, as we drive forward into an era of big data, machine learning, and AI, the fundamental issues of whether, when, and how SM researchers should ask SM users’ permission to analyze and interpret their SM data are still important concerns for researchers in the field and in communities more broadly. Unsurprisingly, consent, and its relation to public–private tensions, represents the most predominantly discussed issue, and, in one way or another, all five papers attempt to tackle and reflect on this.

In our first paper “What Is “Publicly Available Data”? Exploring Blurred Public–Private Boundaries and Ethical Practices Through a Case Study on Instagram,” Ravn et al. problematize the overly simplistic binary division between public and private; they challenge the assumption that con- sent is unnecessary because the data are “publicly avail- able.” As others have explained previously (Locatelli, 2017; Samuel, 2017; Zimmer, 2010), these authors emphasize that relying on a simple understanding of “publicly available” does not make SM research ethical, because some public data are in some ways private or not intended as research data. Drawing on their findings from a project exploring family lives on Instagram, they emphasize that even though they received ethics approval to harvest seemingly public data from the SM site, many of the posts the authors looked at were intimate and potentially sensitive in nature: Most posts in their study included children, and several posts included deceased or seriously ill people. Moreover, the authors explain that during the consent process, some users set their accounts to “private” only after they were con- tacted by the researchers about the project, raising issues of how many users are actually aware that their privacy set- tings allowed not only family and friends to see them but also researchers who may be interested in their posts for analytical reasons. As such, Ravn et al. emphasize that when using public SM data for research, blanket ethical acceptability to access the data is insufficient. Rather, researchers must determine the purpose of the SM user account to consider privacy expectations and context. Beyond aggregate-level data, material must only be repro- duced if users provide consent allowing their data to be repurposed and cited for other audiences.

This recognition of the sensitivity of SM data was also brought to the fore in Ross’s paper, “Researching Experiences of Cancer Risk Through Online Blogs: A Reflexive Account of Working Towards Ethical Practice.” Ross reflects on her experience of conducting qualitative research with online blogs written by those living with a genetic predisposition to colorectal cancer. She argues that, at least for her field of research, the act of blogging was not merely representative but also constituted the illness/risk

experiences and narratives of authors, drawing attention to the individual author behind the published text, and also to the importance of their blog posts to their illness experience and recovery. She argues that the audiences imagined by blog authors were generally their family, supporters, and wider community of fellow sufferers, and intimate details of surgery were often posted alongside photographs of these operations and recovery. Moreover, blog authorship can be conceived as performing affective labor, providing a sup- portive and expressive space for themselves, and others, outside of mainstream health institutions. As such, at least in terms of health and illness blogs, for her, ethical consid- eration should be given to the appropriation of these texts beyond their imagined audience and purpose, into a likely unanticipated arena of academic research, and potentially policy and practice.

Ross’s findings highlight the raw contrast of views around SM research ethics if we compare them with others. For example, von Benzon (2019) argues that such protec- tions against harm through consent are paternalistic and deny agency: A more ethical approach is to ground research in a personal ethics of care, which gives blog authors credit for their contribution (without consent) to improve the lived experiences of those in positions of less power. Others in this special issue also take a different approach to the blurred boundaries around private and public data. In their paper “Looking, Lurking but Not Listening? Theorising the Ethics of ‘Listening’ in Online Ethnographic Research,” Winter and Lavis argue that while “lurking” is increasingly viewed as ethically problematic by many researchers, including Eysenbach and Till, who called attention to it in 2001, it can be an ethically acceptable methodological approach (Eysenbach & Till, 2001). Willis (2019) stresses that while analyzing Facebook news feeds constitutes human participant research, observations are comparable with observational research in a public space and waiving consent could thus be justifiable. Winter and Lavis argue for a “(re)turn to ‘listening’ as central to the practice of online ethnography and digital research” and for a breaking down of the public/private categorization of SM data. These authors view SM data as human participant data but do not see the need for consent. Rather, they say, there is a need to “go further” to consider how researchers can and should lis- ten online, because this allows researchers to participate in, not just observe, online spaces. Drawing from an online eth- nography of interactions around self-harm, they explain that “going further” means “active listening,” which “is the sustained engagement with the words and images that sur- round and give meaning to each post, including the cap- tions, comments, and loops and webs of conversations that ensue,” and “adaptive listening,” which allows for the rep- resentation of digital cultures as their own distinct cultural entities. Ignoring such spaces, they say, potentially does a disservice to participants and the communities to which

6 Journal of Empirical Research on Human Research Ethics 15(1-2)

they belong because the conversations deserve to be lis- tened to in their entirety.

While the question of consent as it relates to public–pri- vate boundaries is often more problematic for small-scale studies, in their paper “Linking Survey and Twitter Data: Ethics, Consent, Anonymity, Archiving and Sharing,” Sloan et al. remind us that these questions can still be tricky when using large data sets, especially in this age of research meth- odologies which can link data across varied data sets. Drawing upon their experiences of asking for consent to link survey and Twitter data, they articulate a range of chal- lenges relating to ensuring the conditions under which con- sent is granted are honored. Using Twitter as an example, the authors note that while consent may be received to link de-identified Twitter data, when tweets are pulled from the website, a deluge of additional potentially identifying infor- mation comes with each tweet. This issue is compounded because of the easy access to the data through the develop- ment of user-friendly tools for researchers who may have little experience apprehending the complexity of the data downloaded. A little knowledge (knowing how to access SM data), say the authors, is a dangerous thing. Rather, detailed understanding of the technical operations of any SM platform must be considered before conducting any research.

The different perspectives discussed in the above papers highlight the importance of context when thinking through the issues related to any SM research project—something which has been repeatedly argued in the SM research ethics literature (Golder et al., 2017; Nissenbaum, 2009; Zimmer, 2018). Scholars emphasize that context is dependent on fac- tors relating to the particular group of participants being studied (Eysenbach & Till, 2001), the sensitivity of the topic under discussion (McKee & Porter, 2008, 2009), the methods used (Markham et al., 2018), and the discipline in which the research is being conducted. In the final paper of this second set (“The Issue of ‘Context’: Data, Culture, and Commercial Context in the Ethical Assessment of Social Media Research”), Özkula draw on some climate change studies which used SM image-, SM text-, and interview- based research in an attempt to conceptualize the notion of context around three dimensions: first, “data context,” which is related to data scale and form, such as quantitative or qualitative focus; second, “cultural context,” that is, con- siderations relating to the cultural makeup of the SM group under study and what cultural expectations around privacy may be made in an individual user’s geocultural context; and third, “commercial context,” that is, reflecting on a given platform’s ownership, infrastructure, as well as recent and predicted mergers toward gauging what users may jus- tifiably assume or not be sensitive with regard to their data use.

The third set of papers contributes to studies exploring user perspectives on SM research (Beninger et al., 2014;

Fiesler & Proferes, 2018; Golder et al., 2017; Williams et al., 2017). They remind us of the importance of determin- ing user perspectives. It is encouraging to see that user per- spectives are not lost from the discussion. In contrast to the lack of consensus in the published literature and above papers regarding whether or not consent is required for SM research, these papers all emphasize the importance of ask- ing SM users’ permission to use their data.

In their article, “Attitudes and Knowledge of Teenagers Regarding Research Ethics of Data Usage at Social Media,” Al Zou’bi et al. report on their survey of 393 Jordanian 10- to 19-year-olds that explored knowledge and attitudes of users to consent, use of their SM data, and trust in SM research. Findings show how most respondents knew how to change their profiles from public to private and knew that their data could be used for research purposes; respondents often gave false or inaccurate responses, and so about two thirds did not trust SM research, preferring off-line methods of data collection. Nearly all respondents believed research- ers should receive consent from users and their parents (for minors) if they wish to use SM data for research purposes. The authors report that half of them would not want their data to be used in research even in a de-identified form (this was slightly higher if the research tackled a specific com- munity issue). These findings resonate with those of Ross’s above, who also argues for the importance of including the voices of SM users in research. These papers are silent on some of the practical difficulties with receiving consent (e.g., low response rates, feasibility; Ravn et al., this special issue; Sloan et al., this special issue; Willis, 2019). Finally, the findings also raise questions about context: As these authors show, user views about SM research are likely dependent on the topic of research. As others have dis- cussed, the SM platform being researched will also be a fac- tor (Twitter, Facebook, YouTube, etc.), perhaps, too, the type of analysis and the sociodemographic of SM users (Fiesler & Proferes, 2018; Golder et al., 2017). Here, we can see how Özkula’s work on context can offer a concep- tual roadmap to these issues.

In the paper, “Concise Consent Forms Appreciated— Still Not Comprehended: Applying Revised Common Rule Guidelines in Online Studies,” Perrault and McCullock (2019) take the requirement for SM user permission for research as their starting point to explore the most appropri- ate approach to receiving such consent. The authors root their study in the growing concern about the length and complexity of consent forms, which have been argued by some scholars to hinder comprehension (Paasche-Orlow et al., 2003; Pandiya, 2010). Notably, the 2018 revisions to the United States Common Rule for the Protection of Human Subjects include a requirement for consent docu- ments to begin with a concise summary of key information that a reasonable person would need and want to know to participate in research.2

Guest Editorial 7

Perrault and McCullock (2019) designed a 71-word, four sentence, online consent form for a study about sexual health. They explain that the form contained the purpose of the study, the study duration, potential risks, a statement of confidentiality, and contact information. Following the con- sent process, the 429 participants were given a choice to either continue directly to the study or learn more about the study—all decided to continue directly to the study. Participants were also tested after the consent process to determine their retention of the information in the consent form and their attitudes about it. While participants liked the streamlined process (for low-risk studies), they only comprehended about half the information. As Perrault and McCullock (2019) note, what is fascinating about this study is its illustration of what Annas (2017) refers to as “informed choice,” that is, that individuals want to be asked to partici- pate, and they want the choice to find out more information, but that this does not necessarily mean that they want to become more informed. We could tentatively extrapolate that these findings nicely illustrate what has been shown repeatedly in other areas of research (Samuel & Dheensa, 2018)—that consent is not necessarily the panacea of ethics practice, but, along with other sociocultural factors, trust in the researcher (which could be argued can come from being asked in the first place, as this suggests openness and trans- parency) is a vital component too. Having said this, as Perrault and McCullock (2019) note, the opposite could also be true: Being content with a short consent form could be indicative of the “click society” which we inhabit, and consent then becomes an oxymoron because participants are not actually informed, and as the authors explain, if a person is unaware of what they do not know, they might not realize they want to know more.

Our final paper in this special issue, van Heerden et al., “Perspectives of Rural Women in South Africa Towards In-Home Sensor Data Collection and Its Implications for Social Media Research,” offers a different perspective to the others. Aiming to ensure ethics best practice keeps pace with the third wave of Internet research, this project assessed people’s understanding and acceptance of passively collect- ing data generated by mobile phone sensors, cameras, and Bluetooth (including episodic audio recordings, GPS data, and video footage) in seven family households in South Africa to theoretically test ethical acceptability. By testing the boundaries of ethics frameworks to accommodate new forms of digital research, the authors report that the data collected were viewed as acceptable, and there was willing- ness to participate in similar studies. While not exploring SM data per se, some interesting findings emerged, which resonate with other papers in this special issue. For exam- ple, similar to Perrault and McCullock (2019), the authors reported that their participants were not always clear about how the underlying technologies worked and what informa- tion could be recorded, but rather than “voicing their

concerns and asking for clarity, most participants chose to simply accept the information they were given,” raising issues of how to address this, as well as stressing the impor- tance of being open, trustworthy, and respectful in our research practices. Second, reminiscent of a question Ross asks in her article regarding when the start of the research process begins, van Heerden et al. argue that given that we have access to so much data “rather than trying to control and regulate the data collection phase, the post-collection analysis and use phases of the research cycle need to be more carefully targeted and scrutinized.” This is not a new point—having been made previously in the big data gover- nance literature (e.g., see Markham, 2018)—but is worth emphasizing: As we move to insurmountable amounts of accessible SM data, ethical scrutiny needs to shift its gaze from that traditionally cast over the data collection phase, to one which is more concerned with how the data are used and reported.

These empirical papers, taken together, reveal the ongo- ing complexities and challenges in SM and big data research. They also show the innovation afforded to researchers in light of growing technological developments and changes. It is not surprising how disparate disciplines find research potential in online environments, and it is equally unsurprising that debate around the differences in ethics and ethical decision making continues. This issue shows, we hope, a range of disciplinary and cultural differ- ences, and, we hope, encourages readers to continue the conversations about ethics and research, broadly conceived. Few parts of our everyday experiences are unmediated at this point in time; pervasive technologies go unnoticed and unrecognized. For this reason, it is more critical now that ethics and ethical decision making be largely visible and equally—or more—ubiquitous.

Educational Implications

From the array of papers presented in this issue, it is evident that ethical SM research means different things to different disciplines and to researchers, depending on their positional- ity and research method. That is not to say that fundamental ethical principles, as presented in the Blemont Report, and throughout other sets of principles or guidelines outlining best practices are not relevant. But, these ethical principles of respect for persons, beneficence, and justice can be inter- preted and instituted differently. This is not a justification for ethical relativism but is the result of cultural and disciplinary specificity. As we see keen differences in perspectives of pri- vacy, for example, we also recognize significant differences in cultural norms and communalism, where the community, not the individual, is key to decision making about research.

We hope to see more intercultural and global perspec- tives in research methods and methods instruction for researchers across disciplines. This is a tall order, as

8 Journal of Empirical Research on Human Research Ethics 15(1-2)

curricula for all, undergraduate, graduate, and postgraduate studies are increasingly siloed and specialized. But, we see this as critical to expand the ways in which the Belmont Report is operationalized in today’s complex research environments. Respect for persons is increasingly stretched to include respect for data or specimens; principles of jus- tice are often impossible to achieve in massive data sets, which continue to exclude certain populations or are so biased that some populations are known only by their algo- rithmic characteristics. We hope readers of this issue take this charge, and work in their institutions to stimulate new research methods and research ethics discourses. This must be expansive, and instruction must not stop at the technical or procedural aspects of research but must look deeply across domains, cultural norms, and the contexts that enable research.

Best Practices

We have called attention to various sets of guidelines or best practices that have been developed since Internet research began; these continue to evolve as technological change enables new forms of and techniques for research endeavors. But, as with the Belmont Report, seminal ethi- cal principles or values are paramount and contextual. The British Psychological Society’s (2017) guidelines provide a concise chart for researchers and ethics boards (see Table 1).

In addition to following these broad ethical principles, for researchers seeking more direct best practices, Buchanan

has suggested the following when preparing an Internet research/SM research protocol:

•• Consider data in use, at rest, in transit, and in dele- tion: Different ethical considerations and security measures; describe procedures (including safeguards for collecting, storing, processing subject data, and data destruction) for minimizing potential risks to subject’s confidentiality;

•• Learn the nuances between and among data manage- ment practices, including de- and re-identification; anonymized, coded, aggregated; || Data sharing and data use agreements; impor-

tant for researchers to work with RECs/IRBs in planning for data sharing—raw data? Themes?

•• Specify where and under what conditions individuals will have access to the data, what will be available and to whom (air gap, clean rooms, data access levels);

•• Address uncertainty in data longevity in more open- ended terms: “Data may exist on backups or server logs beyond the time frame of this research project”;

•• Clarify that one’s consent to use, for example, Facebook, is not the same as consent to participate in research;

•• Ensure research is not in violation of terms of ser- vice, user standards, norms;

•• Disclose what third party sites may be used for col- lection, storage, dissemination, and that access by third parties is possible;

Table 1. Summary of the Main Ethics Issues to Consider When Designing, Implementing, or Assessing an Internet-Mediated Research (IMR) Study.

Principle Considerations

Respect for the autonomy, privacy, and dignity of individuals and communities

Public/private distinction—The extent to which potential data derived from online sources should be considered in the public or private domain;

Confidentiality—Levels of risk to the confidentiality of participants’ data, and how to minimize and/or inform participants of these risks, particularly where they may potentially lead to harm;

Copyright—Copyright issues and data ownership, and when permission should be sought to use potential data sources;

Valid consent—How to implement robust, traceable valid consent procedures; Withdrawal—How to implement robust procedures which allow participants to act on their rights to

withdraw data; Debriefing—How to implement robust procedures which maximize the likelihood of participants receiving

appropriate debrief information. Scientific integrity Levels of control—How reduced levels of control may affect the scientific value of a study, and how best to

maximize levels of control where appropriate. Social responsibility Disruption of social structures—The extent to which proposed research study procedures and dissemination

practices might disrupt/harm social groups. Maximizing benefits

and minimizing harm Maximizing benefits—How each of the issues mentioned above might act to reduce the benefits of a piece

of research, and the best procedures for maximizing benefits; Minimizing harm—How each of the issues mentioned above might lead to potential harm, and the best

procedures for minimizing harm.

Guest Editorial 9

•• Confirm if research will NOT involve merging any of the data sets in such a way that individuals might be identified;

•• Confirm if researcher will NOT enhance the public data set with identifiable or potentially identifiable data.

Research Agenda

Moving forward, researchers must pay greater attention to issues of data fairness, algorithmic manipulation, fake data, data created by bots or AI, and other emerging issues that can confound research integrity and responsibility. As noted throughout, context and how data are used, and how they can potentially be used, are paramount concerns, both for researcher and researched. Research participation and the rights of participants have become a prominent issue in such realms as medicine and in clinical trials, and it is only a matter of time before the subject/participant advocacy movement directly affects SM research. Ongoing empirical research on perspectives surrounding privacy, data use and reuse, data sharing, and secondary research initiatives should be expanded across disciplines. And, these findings should be channeled back to the instruction of research methods and ethics classes ensuring novel researchers are working within appropriate norms and methods.

With the growth of AI and large-scale data, pervasive research is becoming normalized and fields such as com- puter science have become common actors in human sub- jects research. Reframing the human subjects discourse into data subjects will require more ethical analyses and also more empirical research across disciplinary perspectives— and because we are all, through our cell phones, Internet accounts, wearables, implantables, and more, constant sources of data available for research, we all have a stake in the future directions of the research enterprise.

Implications

This issue has, hopefully, provided our readers with many different ways of thinking about the conduct, and the ethics, of SM research presently. Despite over 20 years of guide- lines and practices, researchers and ethics boards still admit to confusion and lack of certainty when preparing or review- ing protocols. This hesitancy around novel forms and meth- ods of research stems from lack of experience with these forms of research; turnover on ethics boards; lack of consis- tency in applying regulatory standards in review, or conflict between the regulatory standards and ethical principles; and, among other variables, awareness and fear of constant data breaches, data security lapses, and public outrage over research itself—one need only to think of the backlash fol- lowing the Facebook Emotional Contagion study.

As researchers, we are agents for and of the public good. Scientific integrity, sound methods and ethics, and transpar- ency are critical. We ask our readers to follow the leads pre- sented throughout this issue, and we encourage them to ask questions. In a time when SM itself seems to divide more people than bridge differences, when hatred and fake news abound across Facebook and Twitter, when governments disagree on how to regulate these spaces, we urge research- ers to stay on the higher ethical ground. Do no harm is a principle worth living.

Gabrielle Samuel King’s College London, UK

Elizabeth Buchanan University of Wisconsin–Stout, Menomonie, USA

Notes

1. https://wearesocial.com/blog/2019/01/digital-2019-global -Internet-use-accelerates

2. https://www.ecfr.gov/cgi-bin/retrieveECFR?gp=&SID=83cd 09e1c0f5c6937cd9d7513160fc3f&pitd=20180719&n=pt45. 1.46&r=PART&ty=HTML

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