Characteristics of Included Studies
Of the 17 studies, 12 explored the ethical concerns of social media users [38,40,56-67] and 5 asked researchers (mainly academics) [42,43,68-71] (Table 1 and Multimedia Appendix 4). The earliest study was published in 2001 and the latest in 2016, with 12 studies published after 2012.
Brief summary of characteristics of included studies.
Numbers of study participants were reported in 16 of the 17 studies. The smallest study involved 26 respondents and the largest study 2260. The total number of participants was over 5453.
In 7 studies the participants were from a single country: the United Kingdom (4), the United States (2), or Australia (1). The other studies either explicitly indicated an international participant coverage (3 studies) or implied an international coverage of participants (7 studies)—most of which used social media for recruitment or study observation.
8 studies used surveys of participants’ attitudes, whereas others carried out more in-depth research and analysis using interviews (6 studies), or focus groups (4 studies). A mixture of open and closed questions was used. Three studies used observational or experimental techniques; with an original design devised by the authors (4 studies used more than one technique).
The majority of the studies did not indicate the demographic details of the respondents; however, in those that did males and females were well represented. Some studies specifically targeted young people [38,59,65].
5 studies were specifically concerned with health-related research [38,57,64,66,69], whereas the remaining studies tended to be more general.
Only 3 studies (from 4 reports) were assessed as “inadequately reported” [42,56,67,71] (Multimedia Appendix 5). The contribution to the synthesis of these 3 “inadequately reported” studies was assessed as being limited. These 3 studies did not impact on the presence of concepts within the synthesis and had only a marginal effect on the detail within the concepts.
Whereas some included studies reported summary data from surveys or questionnaires, the majority of studies presented author interpretations supported by verbatim extracts from participants.
Some responses spanned multiple themes and attempted to categorize overall reactions to social media research use. Many closely related themes underpin the diverse attitudes exhibited by the study respondents. The framework we adopted from our emerging themes was: the 2 actors (researchers and social media users), managing their relationship (consent), and framing the context (responsibilities of the social media site (Tables 2 and Multimedia Appendix 6). Some studies assessed multiple themes in a more integrated and quantifiable way and we consider these first under general reactions.
Summary of coding framework.
Within the arena of “researchers,” we identified themes of the perceived benefit of the research, the affiliation or type of researcher, the validity of the methods used to conduct the research, and the risks to the researchers themselves. Those themes related to the “social media users” were concerned with the risks involved with particular concern for vulnerable groups. Linked to these risks were the intended purpose of the social media poster and their ability to self-regulate through personal censorship or privacy settings. The next theme related to “consent” and the importance of and difficulties of informed consent and research disclosure. The last theme was regarding “responsibilities”—either via the social media site (including the platform and site administrators) or legal requirements (Tables 2 and Multimedia Appendix 6).
Three studies attempted to quantify general reactions to social media research. Moreno found that over half (56.1%, 74/132) of university students “strongly like” or “somewhat like” the concept of using Facebook for research by university researchers, nearly a third (28.8%, 38/132) were “neutral” and only 15.2% (20/132) were “unsure or uneasy” or had an “overt concern” .
Williams found that 37.2% (N=564) of social media users were “not at all concerned” with their social media information being used by university researchers, whereas 46.4% (N=564) were “slightly concerned,” 11.2% (N=564) “quite concerned,” and 5.2% (N=564) “very concerned” . Evans found that 60% (N=1250) of social media users felt that “sharing individuals’ social media data with third parties, such as the government or companies, for research purposes” should not happen and 32% (N=1250) felt that “sharing overall numbers of social media data with third parties, such as the government or companies, for research purposes (but not linked to individuals)” should not happen .
Respondents in Evans may have been less positive because they were given use of examples relating to government and companies rather than university researchers [38,59,67]. The more positive attitudes in Moreno may be linked to surveying younger people [38,59,67].
Perceived Benefit of Research
Research was considered more acceptable if “it’s going to a good cause”  and was “morally right” or for “general good” (such as social benefit or to help others) [38,40,56-59,62-65]. Some respondents were more specific—stating that social media research could give a voice to patients and other groups, uncover true prevailing issues, and improve patient care [57,58,65];
I have no reservations about your mining information from forums...it will provide much information about the human side of illness and how individuals singly and collectively approach and cope through sharing. Dare I say its importance cannot be understated.
Diabetic forum user 57
I kind of think it’s cool when it’s stuff that’s like the flu, because then that’s how they know to get the vaccines to a place.
Twitter user 64
Others described the general benefit of social media research as a precondition to acceptance [38,40,57,65] or considered if the benefits outweighed the risks [40,64]. Others felt positive provided a caveat or set of conditions had been met, such as informed consent (see following sections).
Whereas some stipulated the good that should come from social media research, others stated the research they would not like to see, such as research with a “bad intention” [38,65], for commercial gain [40,57,62,63] or to drive an agenda .
The strong feeling for the “public good” meant that some felt service to the greater social good was more important than individual privacy concerns . However, others considered that social media users’ desire for privacy should take precedence over researchers’ goals .
Type of Researcher
Linked to the purpose of the research was the affiliation of the researcher. The type of organization or company influenced whether or not respondents viewed research as “good quality” and user concerns about use of social media information [40,42,58,59,64,65,67,69]. Generally, respondents were less concerned about use of social media information by university researchers, than by students , the police, government organizations , commercial organizations [40,59,64,67] or journalists . But no difference was reported between health organizations and researchers .
Social media users who preferred not-for-profit researchers (such as academics) to commercial organizations did so because the former were felt to be more “productive,” more “ethical,” and “not exploitative.” Furthermore, users did not like their social media posts being used to generate a profit for others [40,58,64].
Validity of the Research Methods (High and Low)
Whereas users’ perceptions of the validity of social media research was partially influenced by the researcher affiliation, they also discussed its methodological rigor on its own merits. Attitudes were divided as to whether social media research could be viewed as high or low validity research, particularly compared with more traditional research methods. Those users who viewed social media research as high quality cited it as a means of quick access to vast amounts of timely information and large samples to mitigate the effect of false information or extreme views and improve research accuracy . Anonymity of posts was also thought to encourage open and honest opinions and discussions particularly about sensitive issues or nonconventional or “politically incorrect” views. Research using social media was also seen to avoid biases inherent in having to answer questions in the presence of others, such as in a survey .
In contrast, other social media users were concerned about the low validity of the research in terms of quality of the data, representativeness, and poor methodological approach [40,58,64,65]. Concerns were raised about inaccurate or false data or accounts with people severely limiting what they post on the Web (see self-regulation), and behaving differently off and on the Web [40,58 64,65];
I’ve never once posted anything negative. So if you took that data, it would not be accurate, because of course I have had bad days or sad days.
Twitter user [ 64]
Social media posters were not considered representative of the general population and using social media would lead to “only the loudest voices heard” [40,64].
Some social media users were skeptical not only about the data posted on social media but also about the accuracy of the methods of using social media, and biased research;
You can’t even get targeted advertising right, what makes you think public health accuracy is going to be any better?
Twitter user [ 64]
Many researchers in the fields covered by this list do research solely to “prove” that our illness are faked or psychological. Most of us do not care to operate with people like that. Any truly unbiased research is fine.
Chemical-injury mailing list owner 
Risks to Researchers
Insults or being “flamed” were the most common threat posed to researchers [58,60,61]. Researchers spoke from experience of the need for care that they do not become victims to trolls and to separate their “researcher” persona from their “personal” persona and thus protect the boundaries between their professional and personal lives [60,61,71].
The potential for more extreme harm was cited in countries with governments which control Internet access and communications . For example, an associate professor carrying out a study in Central Asia stated that local researchers could be risking their lives by conducting social media research;
I can’t get anyone to work with me right now because the Uzbek government just passed a law that anyone accused of giving sensitive information to foreigners will be accused of treason, and the law doesn’t define what is sensitive information. Now the penalty for treason in Uzbekistan is death, I believe.
Associate professor, University of Washington 
Social Media Users
Risks to Social Media Users
Social media users were also worried about the risks of judgment or ridicule or unsolicited attention on the Web and, more seriously, “abuse” or bullying [40,43,64,65,70]. Other possible harm included exploitation from organizations or use by the police or courts for purposes of prosecution in divorce cases, child custody cases or lawsuits [40,58]. Other social media users felt very uneasy about social media research or felt it was “creepy” or “scary” [38,58,60,61,64,65]. Respondents commonly held the perception that posters are being “exploited” or “used,” with researchers using social media posters to “get someone to do their work for them” was widely held [58,65].
Risks were associated with data being taken out of context, used inappropriately or the poster being identifiable. Users were concerned at the potential to distort the context in which something was said or that findings would be used to defend or promote something that was not intended (see purpose and validity of the research) [40,64,65]. Some respondents, although happy for researchers to use verbatim quotes, felt that “if it actually involves taking your comments and interpreting it, then it’s a very different thing” . Use of verbatim quotes, rather than some form of interpretation , was one solution to taking comments out of context. However, this bought about issues of anonymity and privacy.
Researchers were generally aware of the risks to social media users (even with anonymized data) and considered these risks in their studies [43,70]. In addition, researchers were worried that the risks were not taken seriously by international review boards (IRBs) [43,70]. Deidentification of social media posts was seen as crucial to minimize negative consequences . However, using verbatim quotes could compromise individual anonymity (see privacy).
Whereas users were well aware of the risks, they exhibited a feeling of apathy [38,40,56,64] with risks just being something to be accepted and the only way to stop it happening being to stop using social media [38,40,56,64];
With some of the stuff I write, I am uncomfortable thinking it is going to be accessible for a long time but this is after all the Internet and it’s hardly private...The alternative, (that is) total privacy is to sit here in my house alone and not communicate. I’d give it about three weeks before total insanity set in.
Discussion list member 
Risks extended beyond individuals to social media groups. It was considered important to maintain social media as a protected space where members may speak openly without concern that their words will be shared outside the group [65,66]. Researchers were seen by some as an intrusion which can destroy the dynamics and enjoyment of using social media and curtail freedom of expression [58,65,66,70]. This was reiterated by some users who reluctantly self-regulated their posts . Some users even felt that the damage to communication and community within these forums could lead to people not participating or sites closing [58,70].
Certain groups such as children and teenagers [42,43,62,63,65,71], individuals suffering from mental health issues , and even the deceased  were perceived as vulnerable and thus required extra emphasis on respect and caution to counteract this vulnerability [65,66]. The legal context and government practice of the country from which the post originates may also affect the potential for harm. For example, homosexuality is illegal, or at least taboo, in certain regions. Thus, individuals could be exposed to severe harm if their sexual orientation were publicized . Risks to professional reputations and careers were also raised for those, such as school teachers or health professionals, with responsibility for potentially vulnerable or impressionable individuals .
Whereas some social media users thought ethical principles of research should be upheld regardless of the topic of the research [40,65], others thought that topics of a sensitive or personal nature needed more consideration [58-61,65,70]. The sensitive nature of some discussion groups was cited as good reason to prohibit or discourage researchers;
Our code of conduct explicitly prohibits information gathering from SPALS (subsequent pregnancy after a loss support) for other than immediate personal use. …Privacy and confidentiality are also concerns. We don’t want to attract the “research-paparazzi.”
List owner 
Original Purpose of Posts
When social media users post on social media, they may have no expectation that this would ever be used for research [40,56,57,65,71]. The intended audience may be limited to friends and family and possibly “friends-of-friends” [65,71]. Considerations of the wider implications and access by third parties are not likely to be at the forefront of many social media users’ minds [40,56,57,65].
Even if people are aware of the public nature of social media, people may still “get carried away with themselves when they are writing (on social media platforms)”  and then “once it is on there, to try and get rid of it, it’s too late or it’s too hard” . Thus, there is a need to consider carefully the impact of reporting of verbatim social media data no matter how open or public a site is considered to be ;
I was also very irritated with people who used that argument that we should not ask for informed consent because it is easy to get into the groups. It is the participants’ purpose for being in the group that is important in a way and their feelings about what kind of space this is.
Researcher, Norwegian University of Science and Technology [ 70]
Privacy and Self-Regulation
Whether social media should be seen as a public or private space occasioned contention as well as confusion [40,42,43,56-66,68-71] and was the principal factor in the likelihood of approval for social media research projects . Some social media users believe that “there is no such thing as privacy online” , so once information is posted it is available to the public and thus can be accessed and used for research purposes [38,40,57].
Despite the commonly held view that social media are public, some privacy was still expected and this raises caution for Internet research [38,56,57,62-64]. Some users still expressed discomfort about it being used—although appreciated how contradictory this may appear [57,63];
I write a blog about my experience of diabetes and would feel very aggrieved if I found any of it quoted in a medical research paper without having been asked. I realise this is slightly contrary (since I am posting and effectively actively encouraging readership) but nevertheless it would feel like “theft” of my content.
Diabetic forum user [ 57]
An expectation of privacy resulted, in part, from a lack of understanding of the extent of the public nature of social media exchanges . Navigating the privacy settings of social media isn’t always simple or straightforward. Some social media users did not know what is public or private on social media or what their settings were [38,64,65]. Some users did not understand the permanent nature of social media data, how extensive data reach can be, and the big data computational tools that can be used to analyze posts . Users also felt it was easy to forget or not think about this while posting (see risks) .
Confidentiality and anonymity were thought to help protect privacy [42,43,70,71]. Social media users emphasized the importance of anonymity [40,59,64,65,67,69] with approximately three-quarters preferring to remain anonymous [59,67]. Users were also more likely to accept research if it looked at deauthored data or used overall aggregated numbers [40,57-59,64,65,69].
Some respondents (both users and researchers) identified the challenge of using quotations and maintaining anonymity [43,57,68,70] given that quotes, even if anonymized, can be traced back to their origins using a Google search [57,70]. These views were confirmed in a small Web-based survey of academics from a single UK university where only 10 out of 30 researchers agreed it was “very unlikely that individuals will be able to be identified if social media datasets are anonymised” .
One solution to using direct quotes was to cite only indirectly or to paraphrase quotes . This, however, could have implications for those social media users’ who were concerned about their posts being taken out of context (see risks).
Respondents who disagreed with the need for anonymity believed that users are responsible for managing their identity as people “can always be anonymous if you want to be” . For example, users could use a username unrelated to their real name, utilize privacy settings, and select what to share on the Web [40,43,62-65,68]. The idea that there is no such thing as privacy was reiterated (52) and as such self-regulation was key ;
I think our generation is gravitating towards (the idea that) privacy is not to be expected anymore. You have to create it yourself. You have to enable it yourself, because it just doesn’t exist anymore.
Twitter user 
This idea that self-regulation should be relied upon was reflected in the results of the survey of UK academics where 17 out of 30 agreed “it is the responsibility of individuals to rethink how they use social media if they are unwilling for their online public behavior to be studied by researchers” .
These views were inextricable from views on informed consent as social media users who actively “self-regulated” did not think researchers needed to gain consent .
Generally social media users were divided as to whether they agreed or disagreed that social media research required informed consent from posters . Users and researchers who did not feel informed consent was necessary tended to feel that informed consent was implied by the public nature of social media [40,43,57,64]. Others felt that anonymization removed the need for informed consent [40,43,57,64,65,69].
Other social media users expressed reservations feeling that researchers should obtain permission for use [57,58,62,63,65,66]. They linked this to the original intention of the post , data ownership, or to difficulties of anonymizing direct quotes [57,65]. Attitudes appear to be changing as users learn from experience and social media develops;
I have allowed this in the past, but I feel that they should get permission first.
Mailing list owner [ 58]
Gaining consent was seen as part of common decency and not solely to ensure good ethical practice [40,57,65]. Researchers were felt to have a moral responsibility toward Web-based content [40,57,65] and to protect citizens from violations linked to social media research [62,63].
Some researchers tended to assume that proceeding without informed consent was acceptable because social media are public [38,40,43,57,68].
Only publicly visible data was extracted so we thought that, because the data was publicly available, no ethics applied.
Researcher [ 43]
This was reiterated in the survey of 30 UK academics where 10 felt that there is no need for informed consent if social media were publically accessible .
However, they also raised the issue of whether posts represent a “human subject” or text [58,70].
If I think of Perry’s comments as the letter for the editors, I don’t have to get any informed consent, but if I think of it as a personal conversation, I have to get informed consent.
Doctoral student, York University in Canada [ 70]
This issue was not discussed among social media users but when asked, 22 out of 30 UK academics disagreed that “studying public data on social media is essentially same as studying documented text” .
Some users saw the necessity for informed consent as depending upon both the content and type of analysis. Many thought that sensitive, personal posts or posts with a “sexual, political or religious” focus required informed consent [40,58] and were more accepting of the use of aggregate data, generalizations or observational overviews than case studies or the use of quotes (this was interconnected with anonymity) [56-58,64,69,70].
Both social media users [40,65] and researchers [43,68,70] felt that it was difficult to implement informed consent. Challenges related to the large amounts of data involved, the impossibility of getting informed consent from all the users, and difficulties in how and whom to ask [43,70]. The impracticalities of detecting minors were also highlighted [43,65]. However, where respondents favored consent, they did not think that logistical burdens offered a justification for not seeking permission [40,65].
Many social media users felt that the collection, access, and use of social networking data should be transparent [40,56-58,60-66]. Some felt that authors of postings should know how their comments might be used “up-front” at the time of producing them [40,42,56] with an option to opt-out of research (or even better, an opt-in) [58-61];
Any researcher that joins a mailing list should identify themselves as such as soon as they have joined-opt better yet before they have joined and ask permission of the list owner. As a person I have a right to know I am being experimented on or studied.
List owner [ 58]
Many researchers agreed that being explicit and transparent as possible about one’s role as a researcher was the best possible action [68,70] whereas some were uncertain about when it is appropriate to collect data without disclosing their identities . Deception of social media users was generally seen as unacceptable .
Respondents drew a distinction between naturally occurring social media data and data stimulated by a researcher’s intervention. It was more important for a researcher to make themselves and their intentions known in advance when participating in forums .
Social Media Site Responsibilities
Terms of Service
Most researchers factor in consideration of “terms of service” for the social media platforms from which they extract data into their research planning . Whereas the vast majority of social media users were aware of “terms of service,” neither researchers nor most social media users agreed that this is sufficient for informed consent [59,64,67,68]. Terms of service were considered too long, dense, and confusing [40,64]; “constantly changing” ; and unread by most members of social media sites [40,64,65,67,69,71]. A few social media users felt that the public openness and accessibility of the platform of social media (such as Twitter or LinkedIn) implies that third parties may use the data . Thus, researchers should not rely upon the terms of service.
There was an absence of consensus over the role of site administrators. Some social media users thought that researchers need to gain permission from the list owner [58,66,69], in addition to the users’ permission;
No individual or entity should be using it (private forum) for research without explicit permission from both the people who writes the message as well as the people/group who runs the mailing list.
List owner [ 58]
Others were vehemently opposed to list owners giving permission on behalf of members;
I think it would be a complete betrayal if (admin) were to give permission on behalf of the members.
Diabetic forum user 
Some social media users thought government oversight or regulation should ensure the ethical use of data and protect the rights of users . Some suggested a law against collecting information about social media users [62,63] and not gaining consent was compared with “hacking” . Others suggested that governmental oversight was unnecessary leading to fears of Orwellian monitoring .
The public nature of social media platforms and their content raises the issue of data ownership [40,57,62,63,66,70]. Some social media users thought that users automatically surrender their right to ownership by posting and that as they are public they are “uncopyrighted so they are ‘free’ for anyone to use”  or the social media platform owns all data on the site [40,57,64].
However, other social media users and researchers thought that users own the intellectual property of content they post and that posts should be treated in line with copyright laws [40,43,56,58,59,66,69,70]. This requires that proper referencing or acknowledgment is in place [40,57,58,70];
If someone decided to republish my post in another forum or document, I would expect my comments to be kept in context and credited to me.
Diabetic forum user [ 57]
However, including a “handle” or the Web-based username in a reference was perceived as problematic by some social media users who valued anonymity over credit [40,57,58,70].
Type of Platform
The type of social media website, such as open and closed groups or sites with privacy settings, also influenced whether consent was considered implicit [40,64,65,69,71];
I feel if a forum is viewable to the public, IE you don’t have to be a member to view any of the forum threads, then you or anyone else can use any of the information you find on any forum.
Diabetic forum user [ 57]
Twitter and Web-based open forums were seen as inherently public forums [40,64,65]. In contrast, Facebook has explicit privacy control settings and was therefore viewed differently [40,64];
It all comes down to the fact that we know that we’re using Twitter and it’s public. I think I might honestly feel differently about that if it were Facebook, because I do feel like there is some degree of privacy in Facebook.
Twitter user [ 64]
iMessage and other messaging functions were viewed as private spaces with closed conversations [58,65];
A mailing list unlike a sidewalk has a membership list and only members are part of that list… the mailing list retains an identity as a PRIVATE forum. With that in mind, no individual or entity should be using it for research without explicit permission..
List owner [ 58]
Social media websites with a fun, social purpose are likely to contain much more “personal” content and were therefore viewed differently from websites with a professional aim such as LinkedIn .
Users were also more concerned about researchers accessing and using photos than written content because text could have been written by anyone—whereas it is more difficult to falsify photos .
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