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Guest Editorial: Ethical Issues in Social Media Research

Journal of Empirical Research on
Human Research Ethics
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DOI: 10.1177/1556264619901215
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 and colleagues explain,
ordinarily, 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 and colleagues show in
this special issue; as SM sites try to window-dress them-
selves 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.
901215JREXXX10.1177/1556264619901215Journal of Empirical Research on Human Research EthicsGuest Editorial
Guest Editorial: Ethical Issues
in Social Media Research
2 Journal of Empirical Research on Human Research Ethics 00(0)
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 10 publications,
each empirically reporting on ethics and ethical decision
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 tensions (Ross,
Winter, & Lavis; Rvan et al; Sloan et al), context (Özkula &
Pearce), SM user perspectives (Khatatbeh et al; Perrault &
McCullock), 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 consensus
in the field of SM research ethics, there is some way yet to
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
and colleagues (2017), which—despite their drawbacks, for
example, see Samuel (2017)—specifically address SM
recruitment. Ethical decision making was therefore based
on more general ethics guidelines, terms of service provi-
sions, other colleagues, the REC Chair, and professional
and personal experience.
In comparison with Hokke and colleagues, 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. context of the research ethics review process, this time
focusing on SM researchers and RECs’ experience and atti-
tudes 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 and colleagues show a lack of per-
sonal and professional 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 inex-
perienced (though they varied in the extent to which
researchers viewed this as problematic). The authors high-
light that, while RECs and researchers are aware of SM
guidelines published by various professional bodies (per-
haps more so than reported by Hokke et al.), guidelines
could only partially compensate for REC members’ lack of
experience and perceived expertise. Similar to previous
studies, their interviewees often relied on informal resources
to support decision making, including advice from col-
leagues 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 3
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 Boundaries, Consent and ‘the Public’
Through an Empirical Case Study on Instagram,” Rvan
et al. problematize the overly simplistic binary division
between public and private; they challenge the assumption
that consent is unnecessary because the data are “publicly
available.” As others have explained previously (Locatelli,
2017; Samuel, 2017; Zimmer, 2010), these authors empha-
size 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 seem-
ingly 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 sev-
eral posts included deceased or seriously ill people.
Moreover, the authors explain that during the consent pro-
cess, some users set their accounts to “private” only after
they were contacted by the researchers about the project,
raising issues of how many users are actually aware that
their privacy settings allowed not only family and friends to
see them but also researchers who may be interested in their
posts for analytical reasons. As such, Rvan 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
4 Journal of Empirical Research on Human Research Ethics 00(0)
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
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 and Pearce draw on some cli-
mate 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 con-
text,” which is related to data scale and form, such as quan-
titative or qualitative focus; second, “cultural context,” that
is, considerations 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 justifiably 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,”
Khatatbeh 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 and Pearce’s work on context can offer
a conceptual roadmap to these issues.
In the next paper, “Concise Consent Forms Appreciated—
Still Not Comprehended: Applying Revised Common Rule
Guidelines in Online Studies,” Perrault and McCullock take
the requirement for SM user permission for research as their
starting point to explore the most appropriate approach to
receiving such consent. The authors root their study in the
growing concern about the length and complexity of con-
sent 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 documents to begin with
a concise summary of key information that a reasonable
person would need and want to know to participate in
Guest Editorial 5
Perrault and McCullock designed a 71-word, four sen-
tence, 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 con-
fidentiality, and contact information. Following the consent
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 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 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 con-
sent then becomes an oxymoron because participants are
not actually informed, and as the authors explain, if a per-
son 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 and
colleagues’ “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 prac-
tice keeps pace with the third wave of Internet research, this
project assessed people’s understanding and acceptance of
passively collecting data generated by mobile phone sen-
sors, 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 frame-
works to accommodate new forms of digital research, the
authors report that the data collected were viewed as accept-
able, and there was willingness to participate in similar
studies. While not exploring SM data per se, some interest-
ing findings emerged, which resonate with other papers in
this special issue. For example, similar to Perrault and
McCullock, the authors reported that their participants were
not always clear about how the underlying technologies
worked and what information 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 importance 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 try-
ing 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 governance 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 col-
lection 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
6 Journal of Empirical Research on Human Research Ethics 00(0)
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
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
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
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 7
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
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.
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
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Guest Editorial 9
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... Materially, blogs are a low-cost and easily available option to study consumers' perceptions that, due to their diary-like structure, also offer a good temporal perspective to studying the process of change in consumption practices [73]. From a validity point of view, the partial anonymity of blogs can create, despite their publicity and social networks, a space that enables the bloggers to express their views more freely than more traditional forms of qualitative social data, such as interviews [69,70]. ...
... From a validity point of view, the partial anonymity of blogs can create, despite their publicity and social networks, a space that enables the bloggers to express their views more freely than more traditional forms of qualitative social data, such as interviews [69,70]. Ethically, this also means that the public nature of blogs is to be taken into consideration when analyzing the content, which is always a performative expression directed towards certain audiences [73]. In other words, blogs can be considered as public open data, but one needs to understand and respect the subjects when analyzing the content for making conclusions that takes into account the very context where they have been created and the connotations they carry within [74]. ...
Full-text available
High meat consumption appears regularly in sustainability discourses but finding practical tools for reduction has proven to be challenging. The rise of social media has opened up new pathways to structure political spaces where grassroots initiatives for experiments can take place. Our paper examines how consumer-citizens started experimenting with vegetarian foods in the context of an innovative Finnish meat reduction social media campaign called Meatless October during its kick-off year in 2013. The focus is on participants’ perceptions of the campaign and reflections of the experiment process. We analyzed participants’ blog posts by using a qualitative content analysis. Our results show that the participants were often strongly motivated by the campaign’s sustainability frame. They also saw the campaign both as a communal challenge and an opportunity for political action, sharing know-how and experiences with the other participants. In everyday life, participants’ main focus and worry were in being able to prepare tasty and healthy vegetarian foods, and they were positively surprised by their ability to learn these skills. Participants typically attributed both success and failure in experimenting to their individual capabilities. Overall, our study suggests that the campaign’s public context pushed private practices towards change by facilitating the experimenting process.
... There is a need for an ongoing process in which the researcher, the participants, and the ERCs work together to identify potential problems to the everevolving SM technology and use and find contextually relevant solutions. 27 ...
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In this era of modern information technology, the world is now digitally connected through various platforms on social media, which has changed the way medical professionals work, communicate and learn. The use of social media in surgery is expanding, and it is now becoming an essential tool for surgical training, research and networking. Articles, journal clubs and surgical conferences are within reach of everyone regardless of geographical location worldwide. Electronic publications have now resoundingly replaced printed editions of journals. Collaborative research through social media platforms helps collect diverse data, enhancing the research's global generalisability. The current narrative review was planned to discuss the importance of social media in advancing surgical research and the use of different social media applications in the context of promoting and disseminating surgical research alongside its evolving ethical challenges.
... BMC Med Ethics (2021) 22:51 of research practices and new methodologies such as post-hoc data mining have blurred the concept of 'human subject' and elicited a shift towards the concept of data subject-as attested in data protection regulations. [6,7]. With data protection and privacy concerns being in the spotlight of big data research review, language from data protection laws has worked its way into the vocabulary of research ethics. ...
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Background Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. Main text In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. Conclusions We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.
... The ethical challenges regarding privacy protections in social networks research continue to evolve with the emergence of new technologies. Social networks health research involving social media has prompted renewed concerns about privacy, confidentiality, and anonymity (Hibbin et al., 2018;Lunnay et al. 2015;Samuel and Buchanan, 2020;Sellers et al., 2020). ...
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Despite the promise of social network research, this method raises important ethical questions regarding privacy and confidentiality. Although researchers and bioethicists have considered research obligations in relation to marginal or vulnerable populations, the views of people who inject drugs (PWIDs) have not been sufficiently considered. To elicit participants' views of research obligations, we conducted in-depth interviews with a subset (n = 40) of active PWIDs enrolled in a large social network study. Findings suggest participants have an expectation of confidentiality but believe this obligation need not be absolute and can be waived if a participant violates community norms or place others at risk. Ethics boards should recognize that marginalized populations are able to articulate complex moral views about privacy and confidentiality. Engaging participants in dialogue about the responsible conduct of research presents an opportunity to correct under-or overestimations of research vulnerabilities when such decisions are restricted to the perspectives of investigators or Institutional Review Board members.
... Since IRBs approve advertising, it will be critical to have IRB members well-versed in digital advertising techniques, ethics, and risks to ensure that these methods are not prevented due to inexperience or approved without proper considerations. [21][22][23] Institutions might provide training in the following competencies: (1) practical use of digital health tools, (2) privacy and confidentiality, (3) history of digital health regulations and policy, (4) digital research ethics, and (5) possible risks and breaches of data and safeguards. Many academic institutions have experts in digital media, ethics, and policy. ...
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: As a result of the coronavirus 2019 (Covid-19) pandemic, clinical research for substance use disorders (SUDs) has been impeded due to widespread stay-at-home mandates limiting the operations of "non-essential" work. Although appropriate to proceed with an abundance of caution to prevent viral spread, there will be detrimental consequences for patients with SUDs if clinical trials research cannot adapt and continue uninterrupted. The field of digital health has strong evidence for its feasibility and effectiveness and offers tools that can facilitate the continuation of SUD clinical trials research remotely in accordance with Covid-19 precautions. Some digital tools have been used as components of SUD research in the past; however, no published clinical trial in SUDs to-date has been entirely virtual. This has important implications for disrupted clinical care, as providers seek guidelines for best digital practices. This paper provides a roadmap for integrating the fields of digital health and SUD clinical trials by proposing methods to complete recruitment, screening, informed consent, other study procedures, and internal lab operations digitally. The immediate future of SUD research depends on the ability to comply with social distancing. Investment in research of digital clinical trials for SUDs provides an opportunity to cultivate benefits for research and clinical care long-term as we can (1) define regulatory requirements for the implementation of digital systems, (2) develop consensus on system-wide standards and protocols in the appropriate use of technology, and (3) gain experience that can translate to the treatment of patients with SUDs through telehealth in the community.
... University ethical research clearance boards struggle to manage ethical online data issues while researchers, also confused with current data use guidelines, may be unethical in using data without participant consent. Samuel and Buchanan (2020) state that researchers are concerned with undertaking ethical research practices, being transparent and adhering to the ethos that participants must not be harmed in studies. Yet this is challenging to achieve in large data sets. ...
Conference Paper
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Using participants' internet and social media data without informed consent, despite being a common practice, presents potential harmful ethical challenges. People have become increasingly concerned how their data is used in research especially after high profile incidents such as the Cambridge Analytica data breach scandal. This study employs thematic analysis methods to identify the ethical challenges of this problem and how to manage them. Three themes accompanied by three sub themes demonstrated that researchers and university ethics boards must work closer together and have up to date knowledge about laws regarding participant data use. Each sub theme is explained with a data example to illustrate the various challenges in using such data for research. Finally, the paper discusses the research's conclusions, its limitations and suggestions for future research.
Given its popularity among youth ages 13–17, social media is a promising avenue for engaging and retaining historically hard-to-reach youth in longitudinal research. Social media use in longitudinal research involving youth, however, has preceded development of best practices for ethical use. This article describes the ethical challenges and considerations of using social media to engage and retain youth within the context of a randomized controlled trial of a group-based adolescent substance use intervention. Best practices for addressing ethical challenges are also provided using the Belmont Principle as a guiding framework. As social media becomes more commonly used to engage and retain youth in clinical research studies, researchers must address emerging ethical concerns within project protocols.
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This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media (SM) sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice - disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines.
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Beginning with the premise that most regulatory guidelines for research ethics are deeply flawed, this article walks the reader through three models that can help social researchers, technologists, and designers identify and reflect on how they’re approaching ethics, or “doing the right thing” in their own work. The first, an error-avoidance model, has traditionally focused on creating frameworks to help researchers avoid repeating historical ethical violations. The second concept-driven model focuses on refining the concepts that undergird core ethical frameworks. Both are dominant in human-focused research and tend to be highly proceduralized, implemented a priori or from the top down as part of largescale regulatory structures. In both of these models, the agency of the researcher is removed or dismissed as less relevant than the agency of the system. The article draws on recent controversies around data collection and corporate experimentation on social media users as well as two academic research cases to illustrate how these two models fail repeatedly because they do not retain enough flexibility to allow for recontextualizing ethics as needed on a case-by-case basis. The third, an impact-model of ethics, offers an alternative whereby researchers, technologists, and designers can take a more active role in decisions about the contexts they study, by exploring the possible positive and negative impact of their work. This article invites us to work toward building a different balance in agential distribution in our models around responsible conduct of research, so that the conceptual and regulatory systems that guide and impede our actions are more balanced with our own agency as decision makers, with accountability and responsibility for doing the ‘right thing’.
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This is an introduction to the special issue of “Ethics as Methods: Doing Ethics in the Era of Big Data Research.” Building on a variety of theoretical paradigms (i.e., critical theory, [new] materialism, feminist ethics, theory of cultural techniques) and frameworks (i.e., contextual integrity, deflationary perspective, ethics of care), the Special Issue contributes specific cases and fine-grained conceptual distinctions to ongoing discussions about the ethics in data-driven research. In the second decade of the 21st century, a grand narrative is emerging that posits knowledge derived from data analytics as true, because of the objective qualities of data, their means of collection and analysis, and the sheer size of the data set. The by-product of this grand narrative is that the qualitative aspects of behavior and experience that form the data are diminished, and the human is removed from the process of analysis. This situates data science as a process of analysis performed by the tool, which obscures human decisions in the process. The scholars involved in this Special Issue problematize the assumptions and trends in big data research and point out the crisis in accountability that emerges from using such data to make societal interventions. Our collaborators offer a range of answers to the question of how to configure ethics through a methodological framework in the context of the prevalence of big data, neural networks, and automated, algorithmic governance of much of human socia(bi)lity
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The rise of big data has provided new avenues for researchers to explore, observe, and measure human opinions, activities, and interactions. While scholars, professional societies, and ethical review boards have long-established research ethics frameworks to ensure the rights and welfare of the research subjects are protected, the rapid rise of big data-based research generates new challenges to long-held ethical assumptions and guidelines. This article discloses emerging conceptual gaps in relation to how researchers and ethical review boards think about privacy, anonymity, consent, and harm in the context of big data research. It closes by invoking Nissenbaum’s theory of “privacy as contextual integrity” as a useful heuristic to guide ethical decision-making in big data research projects.
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Social computing systems such as Twitter present new research sites that have provided billions of data points to researchers. However, the availability of public social media data has also presented ethical challenges. As the research community works to create ethical norms, we should be considering users’ concerns as well. With this in mind, we report on an exploratory survey of Twitter users’ perceptions of the use of tweets in research. Within our survey sample, few users were previously aware that their public tweets could be used by researchers, and the majority felt that researchers should not be able to use tweets without consent. However, we find that these attitudes are highly contextual, depending on factors such as how the research is conducted or disseminated, who is conducting it, and what the study is about. The findings of this study point to potential best practices for researchers conducting observation and analysis of public data.
Social media use has become ubiquitous in the United States, providing unprecedented opportunities for research. However, the rapidly evolving research landscape has far outpaced federal regulations for the protection of human subjects. Recent highly publicized scandals have raised legitimate concerns in the media about how social media data are being used. These circumstances combined with the absence of ethical standards puts even the best intentioned scientists at risk of possible research misconduct. The scientific community may need to lead the charge in insuring the ethical use of social media data in scientific research. We propose 6 steps the scientific community can take to lead this charge. We underscore the important role of funding agencies and universities to create the necessary ethics infrastructure to allow social media research to flourish in a way that is pro-technology, pro-science, and most importantly, pro-humanity.
This paper seeks to extend debate on the use of blogs as qualitative data, specifically focusing on the issue of consent in research that uses publicly available but personal content. Typically the argument has been made for the need to protect individual writers and engage with these documents in a considered manner that recognises the inherent vulnerability of amateur authors. This paper will argue that a framing of these writers that foregrounds their potential vulnerability, naivety and even ignorance is in fact highly paternalistic, and therefore counter to an ethical approach to research. In seeking to protect authors from harm, we deny their agency and diminish the act of online publication. Further, this approach, prevalent in academia, is at odds with the legal position, and arguably, the weight of social understanding. A reframing of amateur online authors as informed agents not only increases the accessibility of these data to researchers and subsequently policy makers, but also alludes to a need to credit the contribution of authors without the need to seek permission. Ultimately, this paper argues for a presumption of accountability, unless otherwise proven, and an approach to the use of self‐published online material that mirrors the use of other sorts of secondary data with perceived “professional” authors, such as magazine articles, newspaper columns or organisational literature.
We consider digital ethics, the moral principles or rules of behaviour that govern and guide qualitative internet research from its inception to publication and the curation of data. A number of overarching tensions are identified: flux and uncertainty regarding these rules, the type and status of ethical guidance, the lack of transparency around ethics in practice and the ‘problematic’ nature of qualitative research. Four key debates are then explored namely determining human participation, working with the private/public dilemma, seeking informed consent and from whom and deciding on anonymization or attribution. Looking ahead at the future directions, we consider the areas of researcher role and protection. We conclude with how we might channel the reflexivity that qualitative researchers already embrace when engaging with issues of validity, and use this for an ‘ethics as process’ case-based approach which features ongoing reflexive questioning of ethical considerations throughout the research cycle.